3 October 2017
Last updated 12 May 2021
© Paul Thibault 2017-2021
This document may not be reproduced or distributed, in whole or in part, without the written permission of the author.
as we travelled our path together
My loving partner, Carol, was diagnosed with frontotemporal dementia in August 2014. The long process began with the initial symptoms, diagnosis, Home Care assessment, placement in a Supportive Living facility in January 2016, Long-term Care facility in September 2017 and her passing in February 2020 before the COVID-19 outbreak. Her care involved a difficult path for both of us as we needed to understand and adapt not only to the progressing disease but also to the health care system. The complexity of the provincial health care network is not unique to Alberta but it does cause added stress to individuals and families faced with dementia. At one point during our journey, a friend suggested that I write up the challenges we encountered with the ‘system’. After some thought, it became clear that our path was only one of many taken daily by the increasing number of Albertans suffering with dementia or acting as caregivers. The emotions and daily challenges vary considerably depending not only on the type of dementia but also on the nature of relationship between the person with dementia and the caregiver(s) (spousal, child-parent, sibling) and, of course, on the personalities of all those involved. Although our individual paths differ, we all share the same goal to understand the health care system so that we can navigate it with the least amount of suffering and frustration. The purpose of this document is to summarize the Alberta government, non-profit and for-profit organizations relevant to dementia and to describe possible paths beginning from the early symptoms to palliative care.
This document would not have been written without the initial suggestion by Deborah Forbes to document our experience. Deborah and her partner, Calvin, who are also dementia caregivers, provided much assistance in difficult times. Carol and I were extremely grateful to Dee and Hugh Armstrong for their help and for being our primary mentors in dealing with the emotional and practical needs related to the disease and the health care system. We were very fortunate to obtain care and support from other friends and family members. We were grateful to Carol’s sons, Kristian and Martin Moen for their visits while they were living far away. Kristian also provided very useful feedback, corrections and suggestions for this document and suggested using a blog for the associated website. We were also very thankful to Eventhia Werner, Valerie and Andy Cullen, and Cynthia and Bob Mutch for all their support. Claire Thibault provided support and kindly commented on the document, sharing her extensive practical, administrative and academic nursing experience in Quebec and in the caregiving for family members. Finally, Carol’s very loving and cheerful care companion, Marcy Smith, was always there to provide comfort and share joy and laughter with her.
The above individuals shared their own experiences and, in many cases, provided feedback on the document. Valuable comments and suggestions were provided by other local dementia caregivers including Mary Anne Hayward and Bob Townsend and others who preferred to remain anonymous. Madeleine McKay related personal experiences on services in Quebec and Prince Edward Island, which helped put Alberta’s dementia health care system into perspective. During the writing of this document, various organizations were contacted for information. Many of these were provided with draft copies of the initial document. I would like to thank Colin Zieber, Eileen Schmidt, Michelle Trischuk and James Frey from Alberta Health Services (AHS, South Zone), Matthew Jubelius and the Medicine Hat office of the Alzheimer Society. They kindly provided valuable help by answering questions, providing information and, in some cases, by reading an earlier draft of the document and suggesting useful revisions. Other government organizations that answered questions concerning their services and published documents include Alberta Health, AHS Patients Relation, Home Care and Placement Office, as well as the Alberta Health Advocates, Health Quality Council of Alberta (HQCA), Alberta Ombudsman and the Office of the Public Guardian and Trustee (OPGT). It should be emphasized that, although the above individuals and organizations were very helpful, no partnership, collaboration or endorsement of this document by them is implied.
Provincial regulations, policies and procedures and government department structures are constantly changing and their implementation can vary depending on the specific area in the province. Although this document is based extensively on information obtained from provincial sources, it was also written based on experiences with services provided in the Medicine Hat area. Consequently, this document does not come with a guarantee that all the information is, or remains, fully accurate or applies to Albertan readers in all areas and at all times. Also, this document is not intended to provide medical, legal or financial advice. Readers should refer to professionals on these matters. This is therefore a ‘living document’ that should be viewed as a ‘best effort’ to serve the growing Albertan dementia caregiving community.
The diagnosis of dementia results in a mixture of emotions and challenges including seeking treatment as well as obtaining short- and long-term care. As in any province, this includes interacting with a relatively complex health care system that includes government departments and agencies, hospitals, doctors, testing facilities and non-government organizations (NGOs). Although all of these entities are dedicated to helping patients, the complex structure of the overall health care system can lead to significant uncertainty, stress and anxiety that only helps to amplify the challenges for people with dementia and caregivers in coping with and managing the disease. Unfortunately, the system lacks comprehensive and publicly available guidance, which often leads to asking the question “Where do we go from here?” since it is often not obvious what step in the process follows the previous step. The aging population and increase in dementia cases provide a pool of knowledge from friends and relatives who have gone through the system. This can be of great help for those new to dementia. Sadly, not everyone has this type of help readily available. Also, the variety of dementia types such as, for example, Alzheimer’s disease, Vascular Dementia and Frontotemporal Dementia (FTD), along with the variations within these types, the different relationships between the caregiver and the person with dementia (spousal, child-parent, sibling), and the wide spectrum of personalities of both the person with dementia and his or her caregiver can make it difficult for anyone who has gone through the health care system to fully advise someone else entering or progressing through it. In other words, different people with dementia and their caregivers enter the system at different entry points and follow different paths in the system depending on their individual circumstances.
The main objective of this document is to help people with dementia and caregivers to navigate through the Alberta health care system. The path through the system includes the first appearance of dementia symptoms, the diagnosis, Home Care, Supportive Living and Long-term Care, and Palliative Care. This is first done by providing information on:
- The overall health care system structure relevant to dementia.
- The responsibilities of the various government departments and agencies, and NGOs.
- The role of doctors (GPs, psychiatrists, neurologists and geriatricians) in diagnosing and managing the disease.
- The operation and responsibilities of Supportive Living, Long-term Care and Palliative Care facilities.
The above information lays out the field where possible paths can be defined and followed. The information is obtained through a variety of sources including:
- Information publicly available on government and NGO websites or as hardcopy documents.
- Communication with various government agencies, NGOs and facilities.
- Input from caregivers who have experience going through the system either partly or fully including end-of life.
The input from caregivers is particularly important since it describes the system as it actually works rather than how it was initially designed. It should also be emphasized that, with the exception of some recommendations in the final section, this document focuses on the system in its current state and is not attempting to address deficiencies or future changes planned by the government. It therefore makes all efforts to describe the existing system rather than providing a detailed critique of its structure or its various players. Albeit extremely important, the latter task is left to existing and future independent advocacy groups which are urgently needed to address the rapidly growing dementia challenges in our aging population. Finally, it should be noted that, although much of the overall health care system is common to all of Alberta, this document was produced mainly based on services provided in Medicine Hat. Observations on how the system actually works locally may, in some cases, differ from other regions.
There are many ways to read this document. The reader may:
- Read it from beginning to end.
- Start with Section 3, ‘The Path’, which describes the path through the system.
- Go directly to the section of interest using the PDF document navigation panel.
If one of the last two methods is used, readers may encounter terms, government departments, agencies or organizations that are not familiar to them. They can refer to Section 2, “Main Entities”, to obtain additional information. Readers can also search the Dementia Resources Alberta website blog posts, which contain excerpts from the document. Ultimately, the first method of reading the document from beginning to end will provide the clearest understanding of the document contents.
Before discussing the paths taken by people with dementia and caregivers, it is useful to describe the overall structure of relevant agencies that will impact the path through the Alberta health care system for dementia. These include:
- Provincial Government Ministries and Departments
- Provincial Government Agencies, Boards and Commissions (ABCs)
- Municipal Departments
- Federal Programs
- Non-profit Assistance Organizations
- Medical Doctors and Clinics
- Supportive and Long-term Care facilities
- For-profit Services
The care of people with dementia falls under three Alberta government ministries:
- Alberta Health
- Alberta Seniors and Housing
- Alberta Community and Social Services
Various other agencies are either under the direct control of these ministries or are contracted by the ministries as separate entities in an arms-length relationship.
Alberta Health is the Ministry of Health for Alberta. Although it contracts out much of its activities to other organizations, it plays an important role in key areas that affect people with dementia. In particular, it is responsible for:
- Providing health-related information to the general public.
- Writing legislation such as Acts and Regulations covering a wide range of health facilities and services.
- Providing advocacy services through its Health Advocates department.
The subsections below describe some of the Alberta Health activities that are the most relevant to the present document.
Alberta Health writes policies and procedures as well as legislative documents such as Acts and Regulations, Health Standards, Ministerial Orders, Orders in Council and Directives. Those most relevant to people with dementia will be discussed in greater detail in this document when addressing particular agencies and services. These documents are not only important in terms of their regulatory details but are also essential to the understanding of the overall Alberta health care system framework.
Some of the Alberta Health Acts and Regulations are specifically aimed at providing a framework for various care categories. As shown in Table 1, these are: Home Care, Supportive Living and Long-term Care, all falling under the umbrella category of Continuing Care. Because they receive government funding, all of the entities in Table 1 must follow the Continuing Care Health Service Standards. The facilities listed must also follow the Accommodations Acts and Regulations. Each of the three main categories must follow additional acts and regulations discussed further below.
Table 1: Categories of Government-subsidized Continuing Care Services and Facilities
The “D” prefix in DSL3 and DSL4 refers to “Designated” facilities where the health care is subsidized by Alberta Health Services (AHS). These facilities are subsidized through contracts between AHS and the provider. All residents of designated facilities must first be assessed by Home Care before placement. The “D” suffix, on the other hand, refers to facilities reserved for residents with dementia who require a secure environment. AHS provides on its website a description of the Continuous Care Categories and DSL and LTC facility categories and admission guidelines. A brief summary of the categories is also available in Section 3 of the Introduction to Seniors Housing or Lodging in Medicine Hat document provided by the City of Medicine Hat Seniors Services and the AHS Moving to a New Home in Continuing Care publication.
Albertans have access to a variety of non-government-subsidized Supportive Living (SL) facilities. These include SL1, SL2, SL3 and SL4 facilities. Some SL2 and SL3 facilities are referred to as Seniors’ Lodges, which are available to lower income residents.
Non-subsidized facilities tend to be more expensive and can usually be accessed more easily and quickly than subsidized “Designated” facilities since they do not require a Home Care assessment and applicants are not placed on a waiting list maintained by AHS through a Placement Office. It should be noted that, although they must still follow the appropriate accommodation standards, non-government-subsidized facilities do not directly fall under the Continuing Care Health Service Standards. As will be discussed in Section 4.5.2, this can limit the ability of residents to file health care related complaints to AHS.
The purpose of Alberta Home Care is to keep the person with dementia in his or her home for as long as possible before being transferred to a Supportive Living or Long-term Care facility. The Co-ordinated Home Care Program Regulation provides information on the various aspects of the program including the services rendered, requirements for admission into the program, the appointment and duties of the manager, fees and reimbursements. This document should be read by anyone interested in the program since it provides details not found elsewhere.
Supportive Living (SL) housing is designed for residents that require a moderate amount of care. Two categories are used, SL3 and SL4, with the latter requiring a higher level of care. As previously noted, these categories can come with a “D” prefix for “Designated” and “D” suffix for dementia.
Useful documents describing the services and regulations include:
- Designated Supportive Living: This provides a good overview of the program.
- Supportive Living Accommodation Licensing Act: This is the main act.
- Supportive Living Accommodation Licensing Regulation: This provides regulations on the licensing requirements and the responsibilities of the Supportive Living facility operator.
- Supportive Living Accommodation Standards and Licensing Information Guide: This provides more details on the regulations. It lays out the basis for government audits of facilities and is useful reading, particularly when residents (or family members) have complaints concerning the accommodations or services rendered.
- Supportive Living Accommodation Standards and Checklist: This is a much more detailed document used for audits.
Long Term Care (LTC) facilities are reserved for those with more serious and complex health needs. Useful documents describing the services and regulations include:
- Nursing Homes Act
- Nursing Homes General Regulation
- Nursing Homes Operation Regulation
- Accommodation Standards and Licensing Information Guide
- Long-term Care Accommodation Standards and Checklist
Many facilities include both Long-term Care and different levels of Supportive Living housing. Also, they may incorporate both private and subsidized rooms.
My Health is a very useful website developed by the Alberta Government and Alberta Health Services. It provides a wide scope of information and tools related to health issues. Topics and services include:
- Alphabetically-sorted issues, including dementia.
- Online symptom checker for men, women and children.
- Information on healthy living.
- Search tools to obtain information on
- Tests and treatments.
- Facilities including Hospitals, Supportive Living and Long-term Care facilities and laboratories.
- Patient care handouts.
Supportive Living and Long-term Care facilities are subject to the following acts and regulations:
- Supportive Living Accommodation Licencing Act and Regulation
- Nursing Homes Act and Regulations (General and Operation)
The above acts and regulations are written by Alberta Health, which also performs the facility audits. Audit inspection results for specific SL and LTC facilities may be obtained by entering the facility name or city in the Accommodation Search box on the webpage. These audits pertain only to the accommodations themselves and not to the health care provided in the facilities. As will be discussed below, audits related to health care are performed by Alberta Health Services.
The Alberta Health Advocates organization is a department of Alberta Health and falls under the Health Advocate Regulation. The organization’s main role is to address complaints by any person who feels that an issue has not been addressed by the institution that is the subject of the complaint, such as the Hospital, Supportive Living or Long-term Care facility, Home Care or Doctor or by the Alberta Health Services complaint mechanism discussed further below. Typically, complaints may involve:
- Dissatisfaction with a service.
- Failure of a service provider to follow regulations.
- Deficiencies in the regulations or difficulties in interpreting them.
Health Care complaints in the first two categories are best directed first to the service provider and, if satisfaction is not obtained, then to Alberta Health Services (AHS). The complaint can be made to the Health Advocates if it addresses AHS itself or the manner in which AHS has addressed a complaint. The Health Advocates can also play an important role in helping clients navigate the Alberta health care system. Because they are familiar with the various regulations, they can assist clients in preparing their complaints to a local facility or to AHS. Complaints in the third category are more relevant to Alberta Health, which writes the regulations. In this case, the Health Advocates and, ultimately, the Ombudsman, discussed below, may be best positioned to address the complaint. More information on complaints is provided in Section 4.5.3 of this document.
- “That Albertans understand the impact of dementia and actively work towards optimal brain health.
- That Albertans living with dementia and their caregivers are supported in their communities.
- Timely recognition, diagnosis and clinical management through primary health care, supported by specialist services.
- Timely, accessible, integrated and high-quality dementia care and services.”
Progress on this strategy can be found in the 2019 Alberta Health Report.
Most dementia-related issues fall under Alberta Health and its AHS agency. Because people with dementia are quite often seniors with, possibly, additional physical disabilities, some issues may also involve Alberta Seniors and Housing. This ministry is responsible for a wide spectrum of activities related to seniors. Of particular interest, it offers the Seniors’ Lodge Program through the Social Housing Accommodation Regulation.
Community and Social Services provides a wide variety of social-based benefits and programs, which are discussed in Section 5.3 of this document. It includes Alberta Supports which is a walk-in service that provides information and accepts applications for human services programs including those specifically related to seniors and people with disabilities.
The Alberta Ombudsman investigates complaints involving a wide variety of areas not limited to health care. It has very specific limitations as to what it can and cannot investigate. Its mandate and limitations are clearly outlined on the Before Filing a Complaint section of its website.
The Ministry of Justice and Solicitor General operates the Office of the Public Guardian and Trustee (OPGT), which provides services to those who have no-one to help them as Personal Directive Agent (Guardian) or as Power of Attorney (Trustee). OPGT was previously part of Human Services, now called Community and Social Services.
Government agencies are accountable to the government but operate in a somewhat arms-length relationship. More precisely, as noted on the Alberta Government website concerning Public Agencies:
“Generally, a public agency is a board, commission, tribunal or other organization:
- established by government but not part of a government department;
- that has been given responsibility to perform a public function;
- that is accountable to government;
- that has some degree of autonomy from government; and
- for which the government holds the primary power of appointment.
The Government of Alberta uses the terms ‘public agency’ and ‘agencies, boards and commissions’ (ABCs) interchangeably.”
Whereas Alberta Health is responsible for providing health-related information and writing the governing health legislation, provision of health services to Albertans falls under the mandate of the Alberta Health Services (AHS) agency. The scope of AHS activities is very broad and includes:
- Issuing Alberta Health Cards.
- Providing medical services.
- Funding for capital projects such as hospitals.
- Paying medical staff.
- Providing Home Care.
- Subsidizing Supportive Living and Long-term Care facilities.
- Providing information and advice through its website and its 24/7 811 phone Health Link
AHS is run by the Alberta Health Services Board, a President/CEO and nine Vice Presidents, which are supported by various advisory councils as well as Internal Audit and ERM, Legal and Privacy, and Ethics Compliance offices. A summary of AHS activities, service usage and annual expenses can be found in the Alberta Health Services 2019-20 Annual Report.
For people with dementia and their caregivers, the most important AHS services include:
- Medical Doctors, Nurse and Aides.
- Hospitals and Laboratory facilities.
- Home Care.
- Supportive Living Facilities.
- Long-term Care facilities.
- The relatively new Dementia Advice service, which is provided through Health Link.
The key medical doctors for a person with dementia include:
- General Practitioners (GPs) are involved in performing and ordering tests, including MRI or CT scans, for dementia diagnosis. They also follow their patient while they are at home and usually transfer their services to another GP who visits the patient once he or she is moved to a Supportive Living or Long-term Care facility. GPs remain vital in the care of a person with dementia not only because they deal with both mental and physical issues, but because they are the most likely to visit patients regularly in SL and LTC facilities. For many people with dementia (and their family members), visits to a doctor’s office becomes an increasingly difficult task as the disease progresses. SL and LTC facilities have a list of GPs that have agreed to perform on-site visits. This service is extremely important for the continuing care of the residents. As in the case of visits to a doctor’s office, the cost for on-site visits is paid by Alberta Health Services for anyone who has an Alberta Health card.
- Neurologists are responsible for analysing the MRI or CT scan and performing Cognitive Screening Tests including the much-used Mini Mental State Examination (MMSE), which may also be performed by GPs, psychiatrists and geriatricians. The neurologist reports these results to a psychiatrist. The neurologist may also prescribe medication until the patient can meet the psychiatrist.
- Psychiatrists perform the final diagnosis. If the combination of test results indicates dementia, he or she will usually diagnose the type, such as Alzheimer’s, Vascular Dementia, Frontotemporal Dementia (FTD) or other. Medications may then be prescribed with follow-up visits.
- Geriatricians, including psychogeriatricians, specialize in caring for the elderly. They work together with the General Practitioner to provide an overall care program.
Other professionals potentially involved in the care of a person with dementia include:
Many people with dementia find it very difficult to visit a doctor’s office either due to mobility or behavioural issues. With the exception of visiting GPs, it can be difficult to find a doctor that will visit someone at home or at a Supportive Living or Long-term Care facility. A geriatrician, dentist or optometrist may perform visits in some cases. Pharmacists make regular visits to facilities to review medications and propose changes when needed. Although dentists cannot perform any extensive dental work without the suitable equipment, they can do a quick visual inspection to see if there are any issues that require attention. For many dementia patients, dental work will often require general anaesthesia at a hospital. Unfortunately, some hospitals no longer have a dental clinic. The alternative is to have the work done at a private dental surgery clinic. Optometrists can, potentially, do a significant amount of work outside their offices, including eyeglass prescriptions and detecting some eye diseases such as cataracts and macular degeneration using a set of lenses and simple optometric devices.
Aides and Nurses
- Health Care Aides (HCAs): These have ongoing contact with the residents. They provide personal hygiene, serve medications, distribute meals and document issues, while being involved in many other care and recreation services. HCAs typically have 5 months of education and training.
- Licensed Practitioner Nurses (LPNs): These do most of the nursing work including distributing the medications to the aides, dealing with medical issues not requiring a doctor or Registered Nurse (RN), interacting with the visiting GP and reporting issues to the RN. LPN’s have approximately 2 years of education and training.
- Registered Nurses (RNs): The main role of RNs is to supervise the overall health care for part or all the facility and to support the LPNs for difficult issues. RNs have typically 4 years of education and training.
Because of the wide variety of possible cases, aides and nurses obtain much of their dementia care training during their practice. Years of experience, in addition to education, are therefore important.
As a first step in diagnosing dementia, the GP will send the patient to a laboratory for blood tests in order to exclude other medical conditions with symptoms that could mimic those related to dementia. MRI or CT scans are performed to exclude other possible neurological causes for the symptoms. These scans may also be useful in detecting changes in the brain structure such as local brain shrinkage, which may, in some cases, be an indicator of a certain type of dementia (e.g. FTD). A person with dementia displaying severe behavioural problems such as aggression or psychosis may be transferred from their home or care facility to the hospital psychiatric department for observation and treatment. This visit may be a matter of just a few weeks to allow the hospital staff to sedate the patient and gradually adjust the medication so as to eventually discharge the patient after sufficient observation. Finally, as with any other individual, a person with dementia may make hospital visits for treatment of a physical condition or for emergency situations.
The purpose of Alberta Home Care is to keep the person with dementia in his or her home for as long as possible before being transferred to a Supportive Living or Long-term Care facility. The Co-ordinated Home Care Program Regulation provides information on the various aspects of the program including the services rendered, requirements for admission into the program, the appointment and duties of the manager, fees and reimbursements. This document should be read by anyone interested in the program since it provides details not found elsewhere.
The duration of the home care services depends on many factors including the state and progression of the illness and the availability of a caregiver living in the home. According to the regulations, the services can be divided into the following main categories, each of which includes one or more of the subcategories:
- Health Care Service
- Nursing service.
- Rehabilitation therapy service.
- Health care procedures authorized and supervised by a nurse or a rehabilitation therapist.
- Personal Care Service
- Personal hygiene care.
- Assistance with personal activities of daily living.
- Homemaking Service
- Adult sitting and child care.
- Routine housecleaning, laundry, ironing and mending.
- Budgeting, banking, paying bills or shopping for essentials.
- Menu planning and meal preparation.
Since different Home Care offices may offer different services, potential Home Care Clients should obtain a list of services offered in their area. Contact information for Home Care offices can be found on the Alberta Home Care website. In order to access Alberta Home Care services, Clients must first be assessed by one of the Home Care staff to determine the admission into the program and the needs of the person with dementia.
Home Care also provides visiting RN’s who act as Case Managers and prepare Care Plans for Designated Supported Living (DSL) facilities.
In addition to Home Care, AHS provides a variety of other services relevant to seniors, including people with dementia. Some hospitals offer assessments, care plans and referrals to other agencies. The services are provided by a variety of caregivers including geriatricians, RNs and LPNs and social workers. In Medicine Hat, these services are offered by the Geriatric Assessment Team and the Social Work Department at the Medicine Hat Regional Hospital.
AHS now offers Dementia Advice through its 24/7 811 phone Health Link service. This complements information provided by other organizations such as the Alzheimer Society and is of particular help for those in rural areas who do not have nearby access to a dementia support organization. The calls through Health Link are directed to a nurse who prioritizes calls to Dementia Advice Services based on urgency. The nurse may be able to provide interim advice and support depending on the situation. In some cases, Dementia Advice may refer the caller to an external organization such as the Alzheimer Society.
AHS is involved in many activities in Supportive Living and Long-term Care Facilities by:
- Entering into contracts and partnerships with private Supportive Living and Long-term Care facilities and providing subsidies. This allows users to pay a reduced cost prescribed by Alberta Health.
- Providing previously-described services through the AHS Home Care offices such as:
- Assessments to determine the suitability of a person with dementia for a particular DSL or LTC category.
- RN support for DSL facilities using Home Care Case Managers.
- Any other Home Care service to Clients that is not provided by the facility.
- Performing facility audits related to health care.
AHS has offices in its five zones that receive assessments from Home Care and place the applicants in the appropriate subsidized DSL or LTC facilities. In the Medicine Hat area, this is done by the Coordinated Access and Client Placement Office located in the Medicine Hat Regional Hospital. Placement in a particular facility is based on the Client’s preferences and on room/bed availability. During the placement process, this office communicates with Home Care and the facilities, which have the right to accept or refuse the request based on the Client’s needs and the facility’s resources. Clients can contact the Home Care Case Manager (HCCM) for updates on the process.
Home Care, DSL and LTC facilities are subject to the Continuing Care Health Service Standards. AHS performs the audits related to these standards as described in the Information Guide. Unlike the Alberta Health accommodations audits, the AHS health care audit results are not currently posted on a publicly available website. Some facilities will provide their audit results to residents and caregivers upon request.
AHS has various local Health Advisory Councils to encourage community participation by providing feedback and suggestions for health care issues. The Palliser Triangle Health Advisory Council represents the southeastern region of Alberta, including Medicine Hat, Brooks and Bassano.
- “assist in:
- the gathering of information and evidence, including by means of research activities and reviews,
- the evaluation of programs and other initiatives, and
- the synthesis, dissemination and exchange of knowledge relating to patient safety, person-centred care and health service quality in Alberta;
- identify effective practices and make recommendations for the improvement of patient safety, person-centred care and health service quality;
- assist in the implementation and evaluation of activities, strategies and mechanisms designed to improve patient safety, person-centred care and health service quality;
- engage with Albertans on their experience and satisfaction with patient safety, person-centred care and health service quality;
- other activities as provided for in the regulations or required by a directive of the Minister under section 22.1.”
HQCA’s role in conducting surveys is of particular interest to users of various health services. Recent surveys include:
Although municipalities do not usually offer services specifically dedicated to dementia, they may have a Seniors Services department that provides general services of interest for people with dementia and their caregivers living at home. This can include recreation facilities and “Meals on Wheels” services when these are not offered by the local AHS Home Care office.
Since health issues fall under provincial jurisdiction, the federal government does not offer direct dementia-related services other than providing funds through federal-provincial transfers and disability tax credits, as well as health-related information through Health Canada.
“Health Canada is responsible for helping Canadians maintain and improve their health. To carry out this responsibility, Health Canada supports activities that:
- Preserve and modernize Canada’s health care system
- Enhance and protect the health of Canadians.
- Work in partnership with others, and
- Communicate health promotion and disease prevention”
The Government of Canada and the Alzheimer Society have joined their efforts to launch a Dementia Friends Canada website.
The Standing Senate Committee on Social Affairs, Science and Technology released its report Dementia in Canada: A National Strategy for Dementia-friendly Communities in November 2016. The report provides 29 wide-ranging recommendations to address this urgent issue. Since the release of the Senate report, Bill C-233: National Strategy for Alzheimer’s Disease and Other Dementias Act received final Royal Assent in June 2017. The government has published its 2020 report on this strategy. A summary and status can also be found on the Alzheimer Society website.
Supportive Living and Long-term Care facilities are described in Section 2.5 of this document. These facilities may be private (for-profit or not-for-profit) or public. Depending on the classification, Supportive Living housing may be subsidized by the government with a cost to the resident prescribed by Alberta Health or non-subsidized with the resident paying the full cost charged by the operator. Non-subsidized SL housing can be significantly costlier than subsidized DSL housing. As previously mentioned, non-subsidized SL facilities may be less regulated since they do not fall under the, Continuing Care Health Service Standards except where services are provided by Home Care. There are also “Seniors’ Lodges” for lower income seniors that charge a rate not exceeding that of a Long-term Care facility but ensuring that the rent is no more than 30% of the individual’s income and that the occupant has at least $322 a month left for expenses. The non-profit Cypress View Foundation provides Seniors’ Lodge facilities in Medicine Hat. Some facilities offer “Respite” housing to temporarily relieve caregivers at home. Requests for Respite Care can be made to the Home Care office. Finally, hospitals may also provide temporary care until a resident can find a space in a Supportive Living or Long-term Care facility.
The Alzheimer Society of Canada is the main non-profit charitable organization providing assistance to people with dementia and their family and caregivers. In spite of its name, this organization provides services for all types of dementia. It is often one of the first points of contact and support for newly-diagnosed people with dementia and their family. They not only provide a wide range of resources but offer much-needed emotional support through one-on-one visits with a staff member as well as through support group sessions. They are a point of referral from doctors and also refer to other agencies including outreach groups and AHS Home Care. The society website contains a wealth of information for people with dementia, caregivers, health-care professionals, first responders and financial advisors. Alberta and Northwest Territories branch of the society has offices in various cities. The Society also provides a support and referral program and the Asant Café online discussion forum.
Dementia Advocacy Canada was recently formed to support people living with dementia through meetings, webinars and resources. This group includes a wide variety of people on its executive, including many people diagnosed with various forms of dementia.
Dementia Connections publishes an excellent printed magazine that discusses a wide variety of dementia-related topics. The various articles are available on its website, which also includes resources in the Calgary area.
Dementia Network Calgary was founded in 2013 with a diverse team of caregivers and health care and educational professionals. It is currently active in developing a Strategic Council with a ‘mandate of advocacy to inspire change at a systems level’.
As its Mission Statement indicates, the Early Onset Dementia Alberta Foundation ‘strives to build awareness and promote culture change for persons living with dementia under the age of 65’. It provides information to both caregivers and persons living with Early Onset Dementia.
Other organizations are related to caregivers and seniors concerns. These include:
- Alberta Continuing Care Association (ACCA)
- Caregivers Alberta
- Carers Canada
- Canadian Alliance for Long Term Care (CALTC)
- Canadian Home Care Association
- Caregivers Coalition of Southeast Alberta
For-profit entities are available for a variety of services including private home care. This complements or replaces the AHS Home Care service for people who want the same person to visit the home at specific times convenient to the Client. “Companions”, provided by for-profit organizations, are useful not only in individual homes, but also in care facilities. Other on-site private services are available for personal services (e.g. foot care). Some Clients of Home Care are eligible for the funding of private services through the Self Managed Care Program.
As with any illness, it is impossible to predict if and when we or one of our family members will begin to show symptoms of dementia. Before this happens, it is extremely important to have some legal documents prepared and key financial information summarized beforehand. Once dementia begins to set in, the person with dementia is not only less able to understand legal documents but often becomes resistant and fearful of losing control of his or her finances.
Important legal documents include:
- Power of Attorney
- Personal Directive
Family members should be aware of the location of these documents and the law firm that produced them. Law firms, preferably with experience in estate planning, are a good way to produce these documents, which should be read carefully to ensure that all concerns have been met.
Because family and financial matters continually change, wills should be reviewed periodically.
The Enduring Power of Attorney (POA), which falls under the Alberta Powers of Attorney Act, gives legal rights that are essential for anyone caring for people with dementia that are no longer capable of making decisions. There are two types of enduring Powers of Attorney. The first one allows both the individual and the “Attorney”, with power of attorney, to make decisions with the Attorney assuming the decision making when the individual is incapacitated. The second type is only initiated when the individual becomes mentally or physically incapable to make decisions. This often requires the assessment of two medical practitioners. Once initiated, many institutions will require a copy of the legal document, with signatures of two medical practitioners, if required, before the Attorney can make transactions or even communicate with the institution. These may include:
- Government agencies, including Revenue Canada, Old-age Security and Canada Pension.
- Banks and other financial institutions that hold the individual’s investments.
- Pharmacies and insurance companies.
- Private or civil servant pensions and benefits.
- Home Care, Supportive Living and Long-term Care facilities.
A Power of Attorney document may include more than one Attorney who can act “jointly” or “severally and jointly”. Although not providing legal advice, the Centre for Public Legal Education Alberta provides the useful document, Making a Power of Attorney in Alberta.
The Power of Attorney does not provide the Attorney the power to make health care decisions. These are addressed through the Personal Directive, which allows the “Agent” to make health care and end-of-life decisions including the level of medical intervention. This document can be obtained through a lawyer or using the AHS Personal Directive webpage and form.
The Alberta Green Sleeve is a green plastic pocket that contains documents to instruct Supportive Living facilities, Long-term Care facilities and Emergency Medical Services concerning the types of procedures, including resuscitation and transfer to hospital, to be used in the case of emergency. The Green Sleeve includes the:
A video describes the Green Sleeve documents. The GCD document is filled out by a medical practitioner, such as the patient’s GP, with input from the individual or the Personal Directive Agent. The various selections on this document should be read very carefully since they can have an important impact on the level of care in the case of an emergency. Information in the Personal Directive is useful in providing the GCD information. Supportive Living and Long-term Care facilities will require the Green Sleeve documents before a resident is allowed to move in. The Green Sleeve GCD should be reviewed regularly, particularly when the end-of-life phase is seemingly approaching. At home, the Green Sleeve should be placed in a prominent location so that it can be easily located in the case of an emergency. AHS encourages all Alberta residents over the age of 18 to have a Green Sleeve.
The execution of a Will or Power of Attorney becomes difficult if financial information cannot be found. This becomes a problem for all cases where a person becomes incapacitated or dies. Many spouses are each other’s POA. The arrangement between spouses varies, such as:
- Both spouses have joint accounts and are aware of all the financial information.
- Both spouses have joint accounts but one spouse assumes responsibility for the finances.
- Each spouse has his or her own accounts.
In the last two cases, it is important that the financial information be stored in a location known to the Power of Attorney so that he or she can easily locate the information to perform the POA duties. This information includes, for example:
- Location of Will, Power of Attorney, Personal Directive and Green Sleeve.
- Important contact information.
- Alberta Health Care card.
- Bank accounts.
- Credit cards.
- Tax returns.
- Insurance policies (life, disability and health plans).
- Pensions and benefits.
- House deed and mortgage or rental agreement.
- Service providers such as utilities, phone, cable and internet.
Some law firms provide a list as part of their services.
Powers of Attorney (POA) and Personal Directives (PD) usually include primary and secondary Attorneys and Agents in case the primary designee is no longer able to perform his or her duties. In the case of mutual spousal POAs or PDs, this occurs when one of the spouses dies or is mentally incapacitated with dementia. Once a primary designee is diagnosed with dementia, it is useful to review these documents to ensure that the secondary designee can act as primary designee. Also, a new secondary designee needs to be identified. It is important to note that an individual’s Will, POA and PD documents can only be revised by that individual. Once that individual becomes mentally incapacitated, no changes can be made to the documents, including the list of designated individuals to act as POA Attorneys or PD Agents. This emphasizes the need to review these documents regularly.
The Office of the Public Guardian and Trustee (OPGT) provides services to those who have no-one to help them as Personal Directive Agent (Guardian) or Power of Attorney (Trustee). The process currently takes 3-6 months after submitting the forms. OPGT falls under the Ministry of Justice and Solicitor General.
Before diagnosis, the individual or family members will notice changes such as lapses in memory and cognitive skills or mood and behavioural variations that raise concerns. These may or may not be related to dementia since other medical conditions can result in similar symptoms. The first step is for the individual to visit a doctor. In some cases, this may present a challenge, as he or she may fear the possibility of being diagnosed with a form of dementia. This is the beginning of a process that requires a lot of compassion towards the individual and courage from all concerned to meet the challenges ahead. Early in the process, it is useful for a family member to keep a diary of the symptoms such as memory lapses and confusion as well as a decrease in skills including preparing meals, bathing, dressing, speaking and making decisions. Medical visits, tests and test results should also be documented. Such a diary helps in monitoring the progress of the disease and to communicate concerns to doctors. It also helps in future assessments performed by Home Care and in applying for the Federal Disability Tax Credit (see Section 5.7).
The first visit is usually to a family doctor, or GP, who will perform some blood tests to rule out other possible medical conditions that could mimic dementia symptoms. All efforts should be made to have a close family member, or friend, be part of all doctor interviews. This is important since people with dementia may not be able, or willing, to discuss dementia concerns with the doctor or to understand the doctor’s comments and approach.
Following the blood tests, a second visit is arranged to discuss the test results. If some medical condition emerges that could be the cause of the dementia-like symptoms, the doctor may wish to first treat this condition with the appropriate medication or therapy. Such a condition includes, for example, thyroid or vitamin deficiency. If no such medical condition is apparent, the next step is usually for the doctor to send a request to the hospital or a testing facility for further investigation including an MRI or CT scan. This helps to rule out other neurological conditions.
Following the MRI or CT scan, a subsequent doctor visit will take place to discuss the results. If the scan results do not suggest a neurological condition such as a stroke or tumour, the doctor will then consider the possibility of dementia more closely and refer the case to a neurologist who will review the scan and perform a Cognitive Screening Test. Common tests include the Mini Mental State Examination (MMSE) and the Montreal Cognitive Assessment (MoCA). Based on the results, the neurologist may prescribe medication and refer the case to a psychiatrist. The visit to the psychiatrist leads to the final diagnosis (e.g. Alzheimer’s, Vascular or Frontotemporal Dementia) and possible medication prescription with follow-up visits.
The above process is quite systematic and may take as long as six months. It is not, however, the only possible path. Some GPs perform a cognitive test earlier in the process and some of the above tests may be combined into one visit. The actual cognitive test may also be performed by a nurse through a referral from a physician. In some cases, much of the diagnosis can be performed through a geriatrician. Some medical clinics, including Primary Care Networks (PCN), can offer multi-disciplinary services to address dementia diagnosis and management. Finally, due to the current technological limitations of available testing tools, it should be noted that the diagnosis is not considered to be totally conclusive as to the type of dementia. In some cases, the dementia may actually involve a mixture of types. Once again, it is very useful to have a diary to keep a record of all doctor appointments and test results in order to track the symptoms so that they can be reported to the GP, psychiatrist, geriatrician or to any other doctor who is managing the medical care.
Although this document provides some insight into the workings of the Alberta health care system for dementia, caregivers should make all efforts to contact family members and friends who have had experience in caring for people with dementia. Most people are happy to help because they truly empathize with the challenges and have quite likely, themselves, obtained help from others. This provides important emotional and practical support. As noted in the introduction of this document, all cases are different and people can only offer advice based on their own experience. Some advice may not apply to other specific cases or might apply at a later time. An open mind to the advice and appreciation for those offering it helps to manage the stresses for the dementia caregiver (and person with dementia). This document is intended to complement available support from individuals by providing resources, based on available information and input from a variety of caregivers, that will hopefully help both those receiving and giving advice. The Alzheimer Society and caregiver support groups are, of course, also well positioned to provide information and emotional support. It should be noted that, when seeking advice from an organization, the person with dementia or caregiver may be referred to another agency. This may become confusing if callers from that agency do not precisely identify themselves and the agency they are representing. If not provided, such information should be requested for future reference.
People with dementia may be living alone at home or with a family member. Both situations pose challenges. Those living at home alone find themselves in a position of living independently with diminishing cognitive capabilities. This affects important financial decisions, nutrition, personal hygiene, the taking of medication and a host of other activities that are essential to healthy living. Driving is a particular concern. A family member living with a person with dementia will gradually assume these responsibilities and monitor the progress of the disease. AHS Home Care can provide assistance to both the person with dementia and the caregiver through services described in Section 22.214.171.124. In order to access these services, the person with dementia (or the caregiver) needs to register with Home Care. The initial contact with Home Care can be done directly or through a referral. This involves an interview with a Home Care Case Manager (HCCM) who will guide the people affected through the process.
Before the interview, the caregiver should indicate if the request is only for home care or for placement in a facility. In the former case, the caregiver may ask to meet with the Case Manager alone. In the latter case, the Case Manager will need to meet with the person with dementia to perform the assessment. Following the assessment, a second interview may take place with a Home Care social worker who will review the Client’s finances to assess the resources required for eventual placement in a facility and the availability of income-based subsidies. The social worker will request the last year’s federal tax assessment to determine the yearly income.
Using Home Care services can present some challenges:
- The scheduling of visits is not precise as a time range may be specified.
- Different care providers from Home Care may perform visits for the same task. This can cause stress to the person with dementia who may be happy and cooperative with one care provider and uncomfortable with another provider. This problem can become amplified if the person with dementia is exhibiting behavioural problems and refuses services from one or more providers. In this case, Home Care may simply discontinue services.
- There is limited flexibility in terms of personalizing the care based on client input.
If a suitable arrangement with Home Care cannot be found to address such issues, the use of a private home care supplier becomes the only alternative. “Companions”, provided by private organizations, offer the caregiver respite and time to perform errands. Since people with dementia respond differently depending on the Companion, the caregiver may need to initially experiment with different Companions and select the most suitable one(s) to perform the visits.
Some communities provide external day programs for those living at home. These offer a variety of services to the person with dementia as well as temporary respite for the caregiver. In Medicine Hat, day program providers include the Senior Services Day Hospital, Good Samaritan South Ridge Village and South Country Village.
At some point, people with dementia need to be placed in a facility either because they cannot support themselves alone in a healthy and safe manner or because the caregiver becomes physically and emotionally overwhelmed. This can be a very difficult phase for a variety of reasons:
- The person with dementia may resist being placed in a facility.
- The caregiver cannot predict when he or she will become overwhelmed either because of fatigue and/or due to the progression of the disease, which can vary greatly with the type of dementia. Since placement in a subsidized facility can take many months after the assessment, the caregiver may experience considerable stress waiting for placement, which can only be relieved by seeking an interim solution such as temporary respite housing or by placing the person with dementia in a non-subsidized facility. A request for respite can be made through the Home Care office.
- The assessment process can, in some cases, present significant stress on the person with dementia and on the caregiver. This will depend on the emotional and communicative state of the person with dementia and on other issues related to family dynamics and the overall approach used by the Home Care Case Manager.
The assessment is done by the Home Care Case Manager with the caregiver and the person with dementia. The assessment takes approximately 1-2 hours and requires supporting information such as a list of medications, prescribing doctors and some history on the progression of the disease, which is much easier to provide if a diary has been kept by the caregiver. Prior to the interview, the caregiver should address the following issues with the Case Manager:
- The location of the interview. It may be more comfortable for the person with dementia if the assessment is done at the home.
- The information required for the interview.
- The expected length of the interview.
- Will placement into a facility be discussed in the interview? This may be an important issue if the person with dementia is fearful of leaving his or her home. Since it may take many months before placement actually occurs, mentioning placement may cause a lengthy stressful time. The caregiver should specifically ask the Case Manager not to discuss placement if this is a concern.
The nature of the interview can be affected by the cognitive and communicative states of the person with dementia. In many cases, the person with dementia cannot respond to questions. For some people with Frontotemporal Dementia affecting their speech and comprehension, any level of conversation, including answering a ‘yes’ or ‘no’ question, may not be possible. In other cases, some people with dementia can hide their level of dementia from the Case Manager by, for example, being friendly and keeping their answers short. This issue can partly be addressed by referring to previous Cognitive Screening Tests results.
The Case Manager and caregiver can collaborate before and after the meeting to:
- Address the above concerns with empathy for the person with dementia.
- Detect signs of stress in the person with dementia.
- Direct the conversation and limit its time to cause the minimum stress to the person with dementia and the caregiver.
Once the assessment has been made, the Case Manager, with the help of other Home Care staff, will determine if the person with dementia qualifies for a subsidized accommodation. If subsidized placement requirements are met, the accommodation category, as outlined in Section 126.96.36.199, is selected by the Case Manager and communicated with the caregiver. The Case Manager will interact with the caregiver for the person with dementia as indicated in the AHS Designated Living Option: Access and Waitlist Management in Continuing Care-Procedure.
The caregiver should ask for a copy of the assessment (MDS-HC) as well as any other related documents. These include the Care Plan(s), the Daily Living Support Plan and the Behavior Support Plan. Review of these documents is important to ensure that the person with dementia is placed in the appropriate facility. Also, facilities use this information to determine if they will accept the person as a resident. If the caregiver does not agree with some of the contents of these documents or with the overall assessment, the Case Manager should be informed immediately with requested revisions. Cases involving behavioural issues may require particular attention and further discussions between the caregiver and the Case Manager. For example, the appropriate use of the terms ‘aggression’, ‘anxiety’ and ‘resistance to care’ in the documents is important. These terms have different meanings and should be selected carefully. For example, perceived ‘aggression’ may, in some cases, simply involve ‘resistance to care’.
After discussions with the caregiver, the Case Manager may revise the assessment and associated care plan documents. One situation where this can occur is when it is decided not to place the person with dementia in a secure Supportive Living (DSL4D) or Long-term Care (LTCD) facility. Although the “D” suffix refers to dementia, not all people with dementia are placed in a secure “D” facility. This is often determined depending on whether the person with dementia tends to wander outside his or her home. Many people with dementia do not wander because they simply feel most comfortable inside their home and with their caregiver. However, when the person is placed in a facility, he or she may become very anxious and try to escape to get back to their home and be with their caregiver. If this type of anxiety is observed by others when the caregiver temporarily goes away from the home or leaves the person with dementia with friends, the caregiver should inform the Case Manager, preferably prior to the assessment. If the caregiver is not in agreement with the assessment result and cannot obtain a change in classification from the Case Manager, the caregiver can ask AHS for a second assessment through the Patient Relations Department complaint mechanism discussed further below in Section 4.5.2.
Once the assessment has been finalized, Home Care will ask the caregiver to select a first “most preferred” facility and up to two additional preferred choices. According to Section 3.4 of the AHS Designated Living Option: Access and Waitlist Management in Continuing Care-Procedure, this selection must be made within 7 days of the completion of the assessment and within 72 hours if the person is in an Acute Care facility. The choices can be anywhere in Alberta and are therefore not limited to AHS boundary zones. The selection can be done by visiting the facility and also by making enquiries with friends who have had family members and friends at the facility. The Alberta Health Accommodation Search website can be used to obtain information concerning specific Albertan senior home accommodations. A list of facilities in a specific city is available on the website by entering the name of the city in the search box. Further information for a senior home may be obtained from the facility website and from the Alberta Health Services (AHS) website by entering the name of the facility in the “Search AHS” box. The current rates for subsidized Supportive Care (DSL) and Long-term Care (LTC) facilities are posted on the Alberta Health website.
Lists of facilities for some particular areas of Alberta can be found on the following websites:
- Medicine Hat
- Multiple areas
Some facilities are subject to minimum Alberta residence requirements. For example, Clause 3 of the Nursing Homes General Regulation indicates residence requirements for admission into an LTC facility.
When visiting a facility, the caregiver should first inform the facility that the person with dementia has been assessed by Home Care and indicate the care category. Some facilities may be reluctant to give a tour before the Home Care assessment is made. The first impression of the physical layout of the facility naturally plays a role in the selection. However, other important issues include:
- The resident to staff ratio. How many staff are on each shift where the resident will be located?
- The relative number of HCA, LPN and RN staff on site.
- Security measures for DSL4D and LTCD housing.
- Resident distress alarm and response time. Supportive Living facilities must follow the “Resident safety and security” Clause 18 of the Alberta Supportive Living Accommodation Licensing Regulation.
- Policies and procedures on fall prevention, monitoring and response.
- The menu selection and options.
- The recreation schedule.
- Resident access to outdoor areas (secure and un-secure, independent or in the company of staff or family member).
- Services paid and not paid by the facility (e.g. laundry, cleaning, phone, internet, hair dressing and physical therapy).
- Visiting doctors (names).
- Transportation to and from the facility.
- Level of personalization allowed in a room or suite (e.g. pictures, curtains, furniture and appliances)
- Visiting hours and overnight stay by family members and friends.
- Flexibility of meal and sleep routines.
- Rules for alcohol and smoking.
- Use of chemical and physical restraints.
- Pets (resident- and facility-owned, types).
- Palliative care requirements.
- Available subsidies.
- Residents’ Council (see section 4.5.1).
Some of the above issues can be addressed by asking questions during the tour and reading the facility brochure.
Additional information can be obtained by asking for a copy of the facility rules, the lease agreement and other documents that are provided when signing the lease. It can also be useful to request results of any surveys for the facility, such as those produced by the Health Quality Council of Alberta (HQCA). Audit and compliance results for the facility are available using Alberta Health Accommodation Search website. These results include non-compliances that have been identified as part of regular audits, or verified after complaints. As previously noted, they only refer to the non-compliance with the accommodations standards and not those related to any non-compliance with the Continuing Care Health Service Standards.
AHS provides a useful guide, Moving to a New Home in Continuing Care, on the decision-making, placement and moving processes.
Partly due to historical reasons, different names are used for the same type of facility category. This can cause some confusion when visiting and selecting a facility. Examples include:
- Supportive Living is sometimes referred to Assisted Living.
- DSL facilities are sometimes given the acronym DAL (Designated Assisted Living).
- Long-term Care (LTC) facilities are often referred to as Nursing Homes, which is an older term used in the regulations.
Many facilities do not distinguish between DSL and SL units and omit the prefix “D” when referring to their “Designated” DSL facilities. The simplest way to clarify their terminology is to ask them if a Home Care assessment is required for admission. If it is required, they are then most likely referring to a DSL facility. There may be a few exceptions such as where a resident is subsidized directly by AHS and is admitted into a non-designated SL facility after a Home Care assessment. Apart from these relatively infrequent exceptions, DSL and LTC facilities differ from non-designated SL facilities as follows:
- The health care portion is subsidized by the government.
- Maximum rates are prescribed by Alberta Health.
- Admission requires an assessment by a Home Care Case Manager.
- Placement is done through the Placement Office.
- The facility must follow the Continuing Care Health Service Standards (CCHSS).
- The facility is audited by AHS to ensure that it is compliant with CCHSS.
- A resident or caregiver can make a complaint related to health care to the AHS Patient Relations Department.
- Because it is contracted by AHS, a complaint may also be made to the Alberta Ombudsman.
Although the “D” suffix in DSL4D denotes dementia, it really refers to a secure (locked) unit designed for the safety of the resident. DSL4D residents do suffer from some form of dementia. However, not all residents with dementia are actually placed in a DSL4D facility. The decision is based on the likelihood that the resident will wander outside the facility. Although not all LTC facilities are secure, the “D” suffix is commonly omitted when referring to LTCD facilities.
Many facilities call themselves Seniors’ Homes in spite of the fact that DSL and LTC facilities will admit younger Clients suffering from a disability. Facilities also often internally use their own names that differ from AHS acronyms for particular units within the facility.
Once the first and additional alternate choices for facilities have been determined, these are communicated by the caregiver to the Home Care Case Manager, who will refer the information to the Placement Office. For the South Zone, this is the Coordinated Access and Client Placement Office located in the Medicine Hat Regional Hospital. The placement is subject to the AHS policy Access to Designated Living Option in Continuing Care. The Placement Office manages the waitlist for the various facilities based on criteria outlined in the AHS procedure Designated Living Option: Access and Waitlist Management in Continuing Care. Combined, these two documents are relatively detailed and somewhat complex due to the number of possible scenarios involved. They are nevertheless certainly worth reading in order to understand the overall process and specific scenarios relevant to the person with dementia and their caregiver. Simpler guidance can be found the AHS document, Moving to a New Home in Continuing Care.
In its Access to a Designated Living Option in Continuing Care Policy, AHS outlines key principles involving:
- Patient well-being
- Patient choice
Patient choice and stewardship determine the balance between involving the Client in the decision and using the health care resources efficiently. Fairness and transparency of the process require following well-defined and relevant criteria that are publicly available.
According to the AHS Designated Living Option (DLO): Access and Waitlist Management in Continuing Care Procedure, some factors that play a role in the Client and Placement Office decisions include:
- “reunification of relationships where both require a DLO;
- geographical distance and/or location;
- cultural, linguistic, and/or religious preferences;
- availability of social support(s); and
- wait times, services available, and costs for specific sites.”
The Placement Office maintains a waitlist and eventually contacts the Client regarding the availability of housing. During this phase, the Client should feel free to enquire about the status of the placement application through the Home Care Case Manager (HCCM). There are various possible scenarios once the office is ready to make an offer. The Client may be offered:
- Its first “most preferred” choice.
- A temporary location at one of the other preferred locations.
In the first case, the Client must accept the offer or face the possibility of having their need to be on the waitlist reassessed or their preferred list revised. If the patient is in Acute Care, he or she will be transferred to the next available appropriate Designated Living Option or discharged. In the second case, where a temporary location is offered, the Client may either:
- Accept the offer. In this case the patient will reside temporarily at that location but will be prioritized on the waitlist for transfer to the first most preferred choice.
- Reject the offer. The Placement Office will then enter into a discussion about how to find a temporary solution. At a later date, the Client may be given a second offer for temporary housing. A second refusal would lead to further negotiations except for the case where the Client is in an Acute Care hospital bed or is designated as “Immediate in the Community”. In these two cases, the Client may be required to move to a pay living option. In the case where the Client is in Acute Care, he or she may return home provided that this represents a safe option.
According to the AHS Continuing Care Glossary, Acute Care is defined as follows:
“Acute care is a branch of healthcare where a person receives active but short-term treatment for a severe injury or episode of illness, an urgent medical condition, or during recovery from surgery. In general terms, care for acute health conditions is the opposite from chronic care, or longer term care.”
Acute care would include most people on a waitlist who are occupying a hospital bed. Presumably, the second category has its own priorities which are met on a case-by-case basis. For example, a high priority would probably be given to a patient with complex needs and suddenly losing the caregiver (e.g. the death of a spouse) and with no other family member or friend locally available to assume the caregiver’s responsibilities. The “Immediate in the Community” designation is for “patients waiting in the community which cannot be safely managed in their current environment for more than 48 hours and are at risk of Acute care admission”.
Accepting a temporary location can present a problem since each move involves a significant amount of stress for the person with dementia. On the other hand, delays in placement into a facility can become extremely stressful for the caregiver if he or she is overwhelmed. This may require difficult considerations by the caregiver who is given 48 hours to make the above decisions. It should be noted that there are Alternate Level of Care (ALC) accommodation costs charged while waiting for placement in a DSL or LTC facility if the temporary location involves a hospital acute care bed.
The Placement Office and the selected facility will be in communication to ensure that the facility is willing to accept the Client. The facility has the right to refuse admission based on its available resources to accommodate the Client’s needs while taking into account the needs of the facility’s current residents. A decision by the facility to refuse admission should be done in consultation with the Placement Office and the Home Care Case Manager. In this eventuality, the caregiver can ask the Placement Office, Case Manager and facility to explain their decision. Although facilities should not simply pick the easier or less complex cases for the sake of convenience, there are no detailed Alberta regulations in this respect and some facilities may be more selective than others. The facility can ask for an additional assessment if it believes that the time of the previous assessment is sufficiently far back that the condition of the person with dementia may have changed. This can become a stressful situation for both the person with dementia and the caregiver. In that eventuality, the caregiver may ask that the additional assessment be made at home by the same Home Care Case Manager that did the previous assessment so that the mental state between the two times can be accurately compared. It should be stressed that the above is only a very brief summary of some possible scenarios. A fuller understanding of the process can be obtained by reading though the policies Access to Designated Living Option in Continuing Care Policy and Designated Living Option: Access and Waitlist Management in Continuing Care Procedure. The Client should also stay in close communication with the HCCM to fully understand the options.
It should be noted that AHS requests that Clients make all enquiries to the HCCM, rather than to the Placement Office, concerning their placement status until the Placement Office contacts the Client to make a placement offer. This is to ensure that the Placement Office is not overloaded with enquiries. However, since HCCMs are often in the field and out of the office, they may not be readily available for any urgent requests by the caregiver, who may be under considerable stress. In such urgent cases, or where the HCCM is not in a position to promptly respond to a request, the caregiver may wish to contact the Placement Office directly.
As previously noted, the waitlist is maintained at the Placement Office. Its distribution is very limited. Neither the Clients nor the individual facilities have access to the list, which is constantly changing due to new requests, some of which may be urgent. Priorities are classified as Rank 1 or Rank 2, with Rank 1 being the highest priority:
- Rank 1:
- Temporary to Most Preferred
- Community with Extensive Family Contribution and/or Private Care
- Requesting a Transfer or Updating Choice
- Rank 2
- Acute Care
The above are defined in Appendix A of the Designated Living Option: Access and Waitlist Management in Continuing Care Procedure
It is important to note that, if a Client is no longer mentally competent to sign legal documents or address his or her own health care, Home Care can still perform an assessment without a POA or PD in place and will typically submit the case to the Placement Office provided that the application for Guardianship and Trustee has been submitted. However, facilities will likely refuse admission until the required POA and PD documents are provided. This is particularly the case if a secure unit is involved. As previously noted, the application process through the Guardian and Trustee office currently takes 3-6 months in the Medicine Hat area.
Once the Case Manager and the Client have agreed on a facility, the policies indicate that the date of admission is mutually agreed upon between the Client, the Case Manager and the Facility. Although there is some flexibility, it is typically approximately 5 days.
Signing the lease with a facility is similar to renting an apartment with added health related requirements. By this time, the Client should have received an information package from the facility concerning service costs, including laundry and meals for guests, rules of residency and other information related to the facility’s activities, including recreation and religious services. The facility agent will usually ask for the following:
- Renter’s insurance.
- First month’s rent and damage deposit.
- Power of Attorney and Personal Directive documents for the person signing the lease.
The facility agent may also request to see the Green Sleeve.
In addition to the lease agreement itself, other forms will also need to be filled out, such as:
- Bank information for automatic monthly bank withdrawals (usually a void cheque).
- FOIP-HIA consent form which determines what type of the resident’s information the facility is allowed to make public.
- Form indicating additional services that will be required and paid by the resident, such as laundry.
- Suite inspection report.
- Form which provides information concerning the resident’s needs, food likes and dislikes, including allergies, and hobbies.
- Agreement with the pharmacy selected by the facility for the resident’s medications.
- Medication agreement which includes the resident’s medication coverage, such as the Alberta Blue Cross for Seniors, and any other coverage provided by a private insurance company and/or Public Service Health Care Plan.
Because of the number of forms that need to be signed, it is useful to ask for them in advance to be filled out at home so that as much as possible can be ready when visiting the facility agent. Before signing the lease, Supportive Living facilities must provide the information listed in Clauses 22 and 23 of the Alberta Supportive Living Accommodation Licensing Regulation.
Residents in Supportive Living facilities are required to supply much of what will be in the room including:
- Furniture such as bed, chair(s), dresser, table, television. Although most residents use a single bed, many rooms can accommodate a double bed.
- Medication cost not covered by an Alberta or private health plan.
- Furnishings such as lamps and clocks.
- Curtains, if they are not supplied by the facility; they usually are.
- Television and phone, if required.
- Bed sheets and towels.
- Toiletry such as soap, shampoo, toilet paper and dispenser, tooth brush and tooth paste.
- Garbage and laundry bags.
- Incontinence products, if required. Subsidies are available to substantially reduce the cost (see Section 5.1.1, AADL subsidies).
For residents in Long-term Care facilities, some of the above items are provided. These include:
- Hospital bed and some additional furniture.
- Protective underwear and wipes. These are only provided if they are part of the normal stock, or type, purchased by the facility. Any other type of incontinence products must be purchased and paid for by the Client.
- Most medications. The Client should ask the facility to be informed if there are any exceptions when new medications are prescribed.
- Wheelchair and walker if the Client has been assessed to require one. If it must be ordered by the facility, the Client may need to borrow one, in the interim, from an organization such as the Canadian Red Cross or AJ’s Loan Cupboard in Medicine Hat.
Because of the short time available between the facility selection and the move, some of the above items, such as the furniture, may need to be purchased sometime beforehand if the furniture at the resident’s home is not available or suitable. Phone, cable TV and internet services are usually not provided by the facility. Separate arrangements must therefore be made with the service provider. The facility may be able to provide supplier contacts who normally do the installations at the facility.
Residents are encouraged, and allowed through the regulations, to personalize their room with objects that are familiar to them such as family pictures, knick-knacks, wall pictures or paintings. In preparation for the move, it is useful to obtain a diagram of the room shape and dimensions from the facility beforehand. This helps design the room so that the space is optimally utilized and that the selected furniture will actually all fit into the room. Using the floor paper plan with simple paper cut-outs for the furniture can assist in this task. The aim is to have the room as ready and comfortable as possible before the person with dementia moves into the facility so as to reduce the overall stress.
Preferably, the furniture move should occur at least a day before the resident move to ensure that the room is truly ready. Unfortunately, this may not be possible when a resident moves from one facility to another with the same furniture. The people involved with the move should be aware of the rules of the lease agreement such as those concerning allowable appliances and wall attachments (e.g. nails, screws and wall-mounted TV). Because of fall hazards, some facilities will discourage the use of floor coverings such as rugs. It is also preferable not to move furniture too late in the evening so as not to disturb residents sleeping in neighbouring rooms.
The resident move into the room is preceded by a meeting of the resident and caregiver with key facility staff. This includes the LPN and the resident RN, if the facility has one. For DSL facilities, a Home Care Case Manager (HCCM) assigned to the facility will also be present. This will likely be a different HCCM than the one who performed the assessment(s). The meeting is mainly aimed to have everyone become acquainted with each other and to allow the LPN and RN to make themselves better aware of the resident’s needs. The Green Sleeve will be transferred to the facility at this time. The caregiver may also wish to indicate which available visiting doctor they wish to choose and discuss who will form the Interdisciplinary Team. According to the Continuing Care Health Service Standards, this team is defined as:
“A group comprised of Health Care Providers, the Client or the Client’s legal representative, if applicable, and other individuals of the Client’s choosing, who meet for the purposes of planning, coordinating and delivering Health Care services to the Client. The Health Care Providers on the Interdisciplinary Team are determined by the Client’s assessed Health Care needs.”
The following are typically included in the interdisciplinary team:
- Client or legal representative
- Visiting doctor
- Home Care Case Manager (for Supportive Living facilities)
- RN (for Long-term Care facilities)
- Recreation Director
Others may also be added on an ‘as needed’ basis such as the psychiatrist, geriatrician, dietitian, physiotherapist or any other individual that plays a role in the Client’s care. The Interdisciplinary Team represents a key component of the AHS Continuing Care Health Service Standards (CCHSS) and offers the Client or Personal Directive agent the opportunity to be actively involved in the care provided by DSL and LTC facilities, and by Home Care. In particular, various sections of the standards specify the role of the Interdisciplinary Team for the following activities and issues:
- Care Plan (Section 1, see also definition of Care Plan)
- Client Access to Information (Section 4)
- Risk Management (Section 10)
- Medication Management (Section 12, see also definition of Medication Review)
- Nutrition and Hydration (Section 13)
- Restraint Management; this includes the use of antipsychotics (Section 16). Restraints are also subject to the AHS Restraint as a Last Resort guidance.
The role of the Client or agent is particularly important for medications, including antipsychotics, and in the formulation of the Care Plan, which is prepared by the Home Care Case Manager for DSL facilities and by the facility nursing staff for LTCs.
The facility must also provide the Client the information listed in Clause 4.1 of the CCHSS standards. Following the meeting, the resident will finally be guided to his or her room. The caregiver is free to invite selected friends and/or family members if this provides additional comfort to the person with dementia during the meeting and the move into the room. If arranged beforehand for the extra meals, the family may also wish to join the resident for lunch and/or supper.
Moving into a new home will of course cause stress to anyone. People with dementia, particularly if they are afflicted by anxiety and behavioural problems, can be particularly vulnerable. On the other hand, some people with milder forms of dementia may initially be irritated and unhappy because they feel that they don’t belong in a dementia unit that also houses residents with a more severe mental disability. Caregivers and family members are free to visit as long as they wish during the moving day and following days if they believe that this will help during the difficult transition period. Except for overnight stays, there should be no limit to the time spent or the number of meals they would like to share with the resident. It is also a good way for the caregiver to get to know the staff (HCAs and LPNs) and the overall operation of the facility. All of this is totally left to the best judgement of the caregiver, who is the most familiar with the resident’s needs.
Once the facility has provided accommodations in a Supportive Living or Long-term Care Facility, it essentially assumes the role of the primary care provider. Family members and caregivers continue to play an important role by visiting, providing support and acting as advocates for their loved one. From a resident’s point of view, the personal care will come mainly from the HCAs (aides) who take care of the residents by:
- Serving meals which are either prepared on site or, more typically, through a central kitchen. According to the Supportive Living Accommodation Standards and Licensing Information Guide, there should be at least a three-week cycle for the meals with an available choice and substitute for at least one food group while following the Canada Food Guide. If there are any concerns that the resident is not getting sufficient nutrition and hydration, the LPN, RN and GP should be notified. On this matter, the facility must follow Clause 13 of the Continuing Care Health Service Standards.
- Delivering medication.
- Bathing and oral care with requirements specified in Clause 14 of the Continuing Care Health Service Standards. This can present a challenge for HCA’s because many people with dementia will resist such care.
- Dressing, including changing protective underwear if necessary.
- Changes in bedding.
- Laundry: This is typically limited to bedding and towels. Clothes laundry is usually the responsibility of the resident or caregiver who can either use the local laundry facilities, take the laundry to be cleaned outside the facility or pay the facility a laundry service fee.
- Recreation: This usually involves helping or complementing the work of a facility Recreation Director.
Both the HCAs and LPNs are available for continuing contact with the caregiver who may ask, directly or by phone, for updates on the resident’s status. Phone communication becomes particularly useful during flu or viral infection outbreaks. According to the AHS Continuing Care Visitation and Family Presence Policy, “during a declared outbreak, visitors and family may be asked to refrain from visiting a patient”. It should be emphasized that, due to the word “may”, an outbreak does not necessarily mean that no visitors are allowed. In fact, the AHS Guidelines for Outbreak Prevention, Control and Management in Acute Care and Facility Living Sites states that:
“Complete closure of visitation is not recommended by Public Health since it may cause emotional hardship to both patients/residents and families. However, if a facility is having difficulty controlling an outbreak, Public Health will support their decision to limit visitors.”
The facility may simply recommend that visitors protect themselves from infection by, for example, wearing a mask.
Caregivers, family members and friends should avoid visiting a facility if they have themselves been infected. This is particularly important since older home residents are particularly vulnerable. The general rule of thumb is to wait two days after the symptoms have disappeared before visiting.
AHS has issued specific guidance for visits during the COVID-19 pandemic.
Personal services provided by a facility can be complemented through the use of “Companions” provided by a for-profit organization or by facility volunteers. Regular visits by a Companion offer the following advantages:
- They complement visits by family members and friends by providing additional one-on-one time and activities with the resident.
- They provide the caregiver information concerning the 1) physical needs and mental state of the resident, 2) the overall facility response to the needs and 3) any issues related to the interaction between the resident and the staff.
- They can, with time, determine possible causes, triggers and useful interventions for observed behavioural problems.
- Their feedback can serve as input to the Care Plan jointly developed by the Interdisciplinary Team.
The HCAs report any medical concern to the LPN/RN who will either address it directly or consult with the resident’s doctor. LPNs/RNs also maintain the list of medications, and prepare and check them for distribution. It should be noted that all medication must be prescribed by the resident’s doctor and go through the LPN/RN for distribution. This includes off-the-shelf items. This is to ensure that both the doctor and LPN/RN are aware at all times of the complete list of current medications. Caregivers are of course free to ask for this list and can also discuss medication issues with the doctor and/or pharmacist during their regular visits. They should not be shy to ask for a one-on-one meeting if it is believed that it allows a freer discussion without adding emotional stress to the person with dementia. Access to and discussion of medical information is usually limited to a caregiver who is acting as the resident’s Personal Directive Agent.
Most facilities have a recreation/social director to organize and implement activities. For Long-term Care, this is mandated through the regulations. Typical activities include:
- Music: This is an important aspect of the activities as many musical groups are willing to donate their time.
- Exercise: Formal or through games.
- Nature-related activities such as gardening and bird watching.
- Pet visits.
- Cards and bingos.
- Family activities, including those that involve grandchildren.
- Daily prayers.
Facilities usually post the activity calendar monthly. The extent and implementation of the activities depend greatly on the available staff. This is why it may be important to ask about the available recreational staff resources when selecting a facility. The facility is responsible for selecting and administrating the activities. Residents may, directly or through their caregiver, provide feedback and make suggestions. Although residents are invited to participate in the activities, they are not pressured to do so.
Antipsychotic medication is sometimes used to stabilize dementia patients even if their behaviour is non-psychotic and more related to other factors such as anxiety and fear. The use of antipsychotic drugs for non-psychotic-related behaviour has been the subject of considerable debate. These drugs are known to increase the risk of mortality and falls in older adults. There has therefore been a continuing effort to reduce the use of antipsychotic drugs. For example, Alberta initiated an effort in 2013 to reduce the use of antipsychotic drugs in Long-term Care facilities. By the end of 2018, the use had been reduced by 35% to 17% for residents in LTC facilities who have not been diagnosed with psychosis or a condition associated with psychosis (e.g., schizophrenia). This is significantly lower than the corresponding national average of 21%. AHS continues to promote a decrease in the use of antipsychotics and provides the Appropriate Use of Antipsychotics (AUA) Toolkit for Care Teams, which addresses when and how antipsychotics should be used and how their effect on the resident’s behaviour should be monitored. Residents with dementia may be helped with the use of antipsychotics for some, but not all, types of behaviour issues. This document does not offer any suggestions on this matter other than to encourage caregivers, acting as the Personal Directive Agent, to ask for clarification from the prescribing doctor concerning the benefits and drawbacks of using antipsychotics for the particular case in question. Effectiveness of the medication along with the desired balance between longevity, quality of life and safety for self and others are often important considerations. The use of antipsychotics is addressed in Clause 16.1g of the Continuing Care Health Service Standards document, which states in the “Restraint Management” section:
“where an antipsychotic medication is used as a pharmacological Restraint:
- a Medication Review by a Physician and the Interdisciplinary Team will occur at a minimum of once a month to ensure the appropriateness of the medications prescribed; and
- where the antipsychotic medication is no longer required, a Physician or pharmacist will document instructions regarding the process for gradual dose reduction and discontinuation.”
When antipsychotic medication is prescribed, a behavioural tracking tool is used for a specified amount of time, which is typically two weeks, to evaluate the effect of the medication. This tool is also used if the antipsychotic medication prescription is changed or discontinued. Commonly-used tools include the Behaviour and Symptom Mapping Tool (BSMT) and the Responsive Behaviour Tracking and Assessment Tool. These tools are extremely useful since they monitor different behaviours such as anxiety, agitation or aggression for different times of the day using an easy-to-read behaviour table. This greatly assists in detecting patterns and, in some cases, possible causes for the observed behaviours. Caregivers acting as the resident’s Personal Directive Agent should feel free to ask the facility to see these tables on a regular basis when they are in use. As part of the Interdisciplinary Team, they can be part of the monthly review and must be informed of the results of these reviews and the behavioural assessments that lead to continuing or discontinuing the antipsychotic medication.
Although not commonly used in Supportive Living accommodations, some Long-term Care facilities may use physical restraint methods when deemed necessary mainly to prevent falls and potentially to address safety issues related to sudden episodes of aggression. Restraint management must follow Clause 16 of the Continuing Care Health Service Standards as well as be guided by the AHS Restraint as a Last Resort and the Restraint as a Last Resort Toolkit .
Hospitalization may periodically occur due to:
- Physical ailments that cannot be treated at the facility.
- Behavioural problems that require temporary attention in a psychiatric department.
Depending on the urgency, the decision to hospitalize is made either locally through the LPN and/or RN or by the doctor. If sufficient time is available, the resident’s family member, or Personal Directive Agent, can provide input into the decision. The Goals of Care Designation (GCD) Order of the Green Sleeve will also be consulted when deciding. Transfer to the hospital involves communication and the exchange of paperwork between the facility and the hospital. In most cases, the actual physical transfer of the resident is performed by Emergency Medical Services (EMS).
Once in the hospital, the facility staff transfers its care responsibilities to the hospital staff. Consequently, the person with dementia and family members are then subject to hospital rules, including visitation which is subject to the AHS Continuing Care Visitation and Family Presence Policy and Procedure. The hospital doctor takes on the main responsibility with input from the family members and the resident’s personal doctor. This doctor can visit the resident at the hospital provided that he or she has hospital visiting rights at the time. Family members can certainly act as advocates and ask to see the hospital doctor and talk to the nurses for updates. However, all powers rests with the hospital which usually offers a different environment than that provided in SL or LTC facilities. Also, hospitals do not fall under the Continuing Care Health Service Standards. Consequently, the rights and protection of Clients in hospitals may differ significantly from those in effect in DSL and LTC facilities.
For people with dementia transferred to a psychiatric department due to behavioural problems, the sudden change in environment can be initially stressful to both the patient and the caregiver. It may involve heavy sedation, including antipsychotic medication, and a room that does not offer the comfort and cosiness, or the continuity in the assigned care staff, to which the patient has been accustomed. Some level of physical restraint, such as a locked room or a geriatric chair may also be involved. The use of chemical and physical restraints in hospitals is, however, still subject to the AHS Restraint as a Last Resort guidance. Hospitals are unfortunately not always ideally equipped in terms of suitable accommodations, staff resources and training to effectively address patients with dementia. For these reasons, hospitals should be considered as a last resort for issues that cannot be addressed elsewhere. That said, when all other approaches have failed, a visit to a psychiatric department allows time to stabilize the patient and review the medication. The stabilization may be followed by a supervised gradual decrease in the sedating medication so that the patient can be released in a suitable state of alertness.
The release date for a patient is determined by the hospital doctor, hopefully in consultation with the patient’s personal doctor. The actual release process is managed by the hospital Transition Team. One important role of this team is to determine whether the patient should return to the original facility or be transferred to another facility that can offer a higher level of care. For example, it may be decided to move the patient from a Supportive Living facility to a Long-term Care facility. Once the Transition Team has made its assessment, a meeting is then held with the caregiver which, depending on the situation, may or may not include the patient. The purpose of the meeting is to inform the caregiver of the physical and mental state of the patient, the subsequent placement after release and to allow the caregiver to ask questions. Participants in this meeting include the hospital doctor that was responsible for the patient’s care as well as well as one or more members of the hospital nursing staff. Others present would include staff members of the patient’s facility such as the manager, LPN and/or RN along with the Home Care Case Manager if the patient is a DSL facility resident. Additional information that may not be provided at the meeting, such as doctor’s and nurse’s notes, medications and test results, can be requested after the release from the hospital through the Alberta Health Information Act discussed in Section 4.3 below.
Although hospital services are paid by AHS, residents that are being hospitalized continue to pay for their room and meals at their base facility even if these are not being used. There may also be a limit as to how long a resident’s room can remain unoccupied due to hospitalization. For example, Long-term Care regulations indicate that the patients in an LTC facility can be an in-patient in a hospital (other than an auxiliary hospital) for a maximum of 50 days per fiscal year (Clause 22(1b)).
According to the AHS definition:
“Auxiliary hospitals pertains to all beds, in an approved hospital, for the provision of services for inpatients who have a long term or chronic illness and/or functional disability (physical or mental) whose potential for rehabilitation may be limited and who require a range of therapeutic services, medical management, and skilled nursing care, plus provision for meeting psychosocial needs.”
The regulations do not specify what happens if the 50-day limit is exceeded. This would be addressed by AHS who could potentially decide, in some cases, that the expected hospital visit duration may be long enough to release the patient’s room in the LTC facility in order to make it available to another Client. If this occurs, AHS would ensure that the hospital patient has access to suitable LTC accommodations when released from the hospital. This would be done through the Placement Office.
A resident may move from one facility to another for one of the following reasons:
- The resident wishes to move from their alternate choice facility to their most preferred choice (see Sections 3.4.4 and 3.4.5).
- The resident is asked to move to another Care category due to an AHS assessment, which can occur as the result of:
- A “Significant Change” in Health Status (positive or negative). According to the Continuing Care Health Service Standards, a “Significant Change in Health Status” is defined as: “A consistent pattern of change in a Client’s Health Status which is evidenced by at least two areas of decline or improvement according to the InterRAI Instrument or Standardized Assessment Tool used, and as determined by a Regulated Health Care Provider.”
- The assessment performed by the hospital Transition Team.
- A regular review performed at the facility where the Case Manager determines that the resident’s condition has sufficiently changed to require a different level of care.
- The resident exhibiting “behaviours that are unsafe for themselves, other residents or staff” for which “the accommodation does not have the appropriate trained staff on site” (see Alberta Health Supportive Living Guide). Before any such transfer is decided, the caregiver may want to discuss the issue with the LTC RN or DSL Home Care Case Manager, doctor(s) and members of the Interdisciplinary Team to determine if all reasonable efforts have been undertaken at the current facility to address the behaviour, including changes in medications and care strategies, as well as a temporary stay in a hospital psychiatric department if all other measures have failed. If a transfer from the existing facility is prescribed, the current facility RN or Home Care Case Manager should explain how the resources and staff training in a new facility would be expected to address the behavioural issues of concern differently than the current facility. All efforts should be made to update the existing Care Plan at the existing facility so that the new facility does not need to start ‘from scratch’ when they develop their own Care Plan. Finally, it is the responsibility of the facility to inform the caregiver when behavioural events occur, as well as the medical or care remedies that have been considered and implemented, before making the facility transfer decision.
The same standards also indicate that assessments are to be performed quarterly for Long-term Care facilities and annually for Home Care and publicly funded Supportive Living facilities. As in the case of the initial assessment, the caregiver should ask for a copy of the assessment (MDS-HC) as well as any other related documents. These include the Care Plan(s), the Daily Living Support Plan and the Behaviour Support Plan. These can be discussed with the Case Manager resulting in possible revisions as outlined in Section 3.4.3.
Once an assessment indicates a new Care Category, the process used for the initial placement is repeated (Sections 3.4.4 and 3.4.5). In other words, the case is transferred back to the Placement Office and the Client is asked to provide the most preferred and alternate facilities. For this reason, the resident may need to move, at least temporarily, to an alternate facility, even if the current facility is equipped to handle the new Care Category.
In some cases, Clients may wish to request a move to another facility because they are not satisfied with their current facility or because their main caregiver is moving to another area in Alberta. According to AHS, South Zone, the request for a move from a DSL facility can be made to the facility Case Manager assigned by Home Care, whereas for an LTC facility, the request is submitted to the facility Site Manager. The request is then forwarded to the local Placement Office. For a move to a facility within its jurisdiction, the local Placement Office will place the Client on its own waiting list. The process may be more involved for a transfer to a facility outside its jurisdiction, in which case a complete information package would be requested by the receiving Placement Office. Moves from one facility to another are treated as “Transfers” and are placed as a higher priority on the waiting list. Of course, the above process only applies to government-subsidized DSL and LTC facilities. For non-subsidized SL facilities, the transfer does not go through the Placement Office and is simply negotiated privately between the Client and the sending and receiving facilities.
New care considerations are involved when the person with dementia enters the end-of-life stage. The family and medical staff need to identify that the resident is in this stage and decide on a plan and goals to address his or her needs. This includes determining any appropriate changes to the Green Sleeve Goals of Care Designation (GCD) Order during this stage.
Some communities in Alberta offer specialized palliative care providers. In Medicine Hat, such a service is no longer provided by the Medicine Hat Regional Hospital but remains available at the Carmel Hospice Covenant Health St. Joseph Home.
Many residents will end their days in a Long-term Care facility or at the hospital depending on their special requirements and the Green Sleeve GCD. An LTC facility must follow Section 5 of the Continuing Care Health Service Standards in order to provide the resident and family the appropriate support and services during this difficult period. When selecting an LTC facility, it is important to consider whether it is the desire for the resident to spend the rest of his or her life there, thereby eliminating the need for the resident to move again as the disease progresses. If this is the case, the facility should be asked about their Palliative Care capabilities and resources before it is selected.
There are many possible paths through the Alberta Health Care system depending on a number of factors such as:
- The availability of local family support in the home,
- The rate of progress of the disease,
- The type of dementia and other possible disabilities,
- The occurrence of a sudden illness requiring hospital attention.
Figure 1 below illustrates four of the many possible paths:
- This is a path progressing very gradually from the home, through non-subsidized and subsidized facilities leading eventually to palliative care without any intermittent visits to the hospital. In practice, such a smooth path is probably not very common.
- This is a more accelerated path where the patient is transferred from the home to a secure DSL4D facility with one or more visits to the hospital before eventually being transferred to an LTCD facility as the dementia, and possibly other ailments, progress. In this case the family members have decided for an end-of-life at this facility.
- This path is similar to the previous case except that the person is transferred to the hospital for special treatment and subsequently moved to an LTC facility due to the need for more extensive care.
- This path involves a temporary transfer from the home to a facility for respite to relieve the home caregiver from accumulating stress and fatigue. On this path, end-of-life occurs at the hospital due to, for example, a sudden severe illness or complications following surgery.
|Figure 1: Four of many possible paths through the health care system for a person with dementia.|
Legal documents that govern the Client’s rights include those related to:
- Continuing Care
- Home Care
- Supportive Living
- Long-term Care (Nursing Home)
- Alberta Health Information
- Agreement between the Client and facility operator
The above documents address a variety of issues that have already been discussed, including the services that may be expected. Other issues include privacy, access to information and abuse.
Privacy matters are addressed at two levels:
- Government regulations
- Agreement between a service provider and the Client
Providers must implement documented policies to ensure that the Alberta Freedom of Information and Protection of Privacy Act is followed. Privacy is addressed in Part 2 of the Act. The Accommodation Standards and Licensing Information Guides for Supportive Living and Long-term Care facilities provide more details. For the latter type of facility, additional information can be found in Clause 12 of the Nursing Homes General Regulation.
When entering into an agreement with an operator of a Supportive Living or Long-term Care facility, the resident (or POA) is asked to sign a form allowing the facility to release medical information as needed to provide care. An additional “FOIP-HIA” consent form provides an optional list of personal information the facility will be permitted by the resident for release to the public. Such information includes, for example, if, where and when a resident’s name and picture can be made public.
Service providers that are subject to the Continuing Care Health Service Standards are required to implement policies and procedures to ensure that both the Alberta Freedom of Information and Protection of Privacy Act and the Health Information Act are followed. More information on the latter can also be found in the Health Information Act Guidelines and Practices Manual. For residents in SL and LTC facilities, information regarding medications, test results, behavioural assessments, aide and nursing notes, communications between nurses and doctors, should be available to the Personal Directive Agent upon request, allowing time for the request to be processed. Test results include not only those tests occasionally prescribed by a doctor but also regular tests involving, for example, blood pressure and body weight. For cases where a resident is temporarily hospitalized, information must be requested directly from the hospital, through the Health Information Act, using its request form and will only be provided after the patient has been released. In addition to the information mentioned above for DSL and LTC facilities, it is useful in the case of hospital stays to also request the hospital doctor notes as well as documents related to admission and release. A service fee will be charged by the hospital, which must make all reasonable efforts to provide the information within 30 days.
Service providers that are subject to the Continuing Care Health Service Standards are required to implement policies and procedures to ensure the prevention and reporting of Client abuse. The Accommodation Standards and Licensing Information Guide provides more details for Supportive Living and Long-term Care Facilities. Protection from abuse is also covered by the Alberta Protection for Persons in Care documents which include:
- Protection for Persons in Care Act
- Protection for Persons in Care (Ministerial) Regulation
- Protection for Persons in Care Regulation
At the local level, the publicly funded Home Care office, along with DSL and LTC facilities, must follow Section 18 of the Continuing Care Health Service Standards. This includes:
- Having a documented policy and procedure for responding to concerns.
- Providing documented information on “relevant external complaints and concerns resolution process”. This includes provincial processes described below to address issues that have not been resolved satisfactorily at the local level.
The service provider must provide the above information upon the Client’s commencement of services or upon request. For AHS Home Care, the concern resolution process is governed by the AHS Patient Concerns Resolution Procedure.
Most health care issues encountered by caregivers can be addressed through informal discussions with facility LPNs, RNs or the Home Care Case Manager. For accommodation concerns, the facility administrative staff, including the managers, may be contacted. Ideally, more formal complaints should not be frequently required. Depending on the nature of the concern, these can be made directly by the caregiver to the facility General Manager and/or to Home Care management. One potentially productive approach for health care issues is to first call a meeting of the Interdisciplinary Team and management. Discussions should encourage everyone to understand each other’s concerns and to seek a mutually agreeable solution to the issue. It may also be useful, in some cases, for the caregiver to indicate if the complaint is the result of the facility or Home Care not following the regulations. This is why it is important for caregivers to understand their roles and rights as an important member of the Interdisciplinary Team and be aware of the Continuing Care Health Service Standards, for health care issues, and the Supportive Living or Long-term Care regulations for other issues.
For concerns involving health care, facility Clients, or their legal representative, are entitled to ask for copies of relevant information such as:
- Nursing notes
- Communications, such as emails, between the nursing staff and doctors
- Behavioural assessments
- Medication reviews
If concerns are not addressed to the caregiver’s satisfaction, a written complaint can be submitted to management with supporting documentation, timeline and possible facility and/or Home Care non-compliances with particular clauses in the regulations. If the concern still does not meet a satisfactory resolution, the complaint may then be submitted at the provincial level.
In some cases, the management itself may call for a meeting because of a particular concern the staff has with the resident. In this case, the caregiver should ask for the nature of the concern before the meeting takes place. This avoids surprises at the meeting and allows the caregiver time to research the problem, the regulations and any possible solutions to the problem.
Concerns can also be addressed through a Council as the described in the Resident and Family Councils Act. The formation of a Council for DSL and LTC facilities offers a good vehicle for Clients to communicate with each other and to consolidate their concerns and document them in writing for submission to the service provider. It should also be noted that concerns and complaints are probably more likely to be addressed quickly if they involve failure to follow regulations. It is therefore worthwhile for at least one member of the Council to be familiar with the regulations governing a particular service and facility. In addition to dealing with concerns, Councils can also be very useful in fundraising for projects of particular interest to the residents.
Submissions of complaints at the provincial level vary depending on the nature of the complaint. Those related to subsidized and non-subsidized SL and LTC accommodations should be addressed using the Alberta Health Complaints Mechanism. On the other hand, concerns related to Home Care and to health services provided in subsidized DSL and LTC facilities are handled by the AHS Patient Relations Department. If in doubt, one of these two entities should be contacted to determine whether the concern is related to accommodations or to health service. It is important to note that those who submit concerns at the provincial level will first be asked to try to resolve the issue at the local level. AHS, which is required to follow the Alberta Patient Concerns Resolution Process Regulation, provides information on Patient Concerns & Feedback and a brochure expressing its interest in obtaining feedback from Albertans.
Although they must still follow the appropriate accommodation standards, it should be noted that non-government-subsidized facilities do not directly fall under the Continuing Care Health Service Standards, which only accepts complaints related to Home Care and to government-subsidized DSL and LTC facilities. For some SL1 and SL2 facilities, this is not a major concern since most health care service is provided by Home Care, which does fall under these standards. It can however become a concern for SL1 and SL2 facilities that provide some of their own health care services or for non-subsidized SL3 residents, where the care is mainly provided by the facility itself. That said, some facilities provide both DSL3 and SL3 units and may elect to follow the same policies and procedures for both types of units in spite of the fact that they are not required to do so for SL3. In this case, there still remains a concern if the procedures are not consistently followed since it may be difficult to raise a complaint with AHS. In this respect, a DSL3 resident is better protected by the regulations. Similar problems occur when filing complaints with the Alberta Ombudsman, which does not accept complaints involving companies. As previously noted, there are a few relatively infrequent exceptions such as where a resident is subsidized directly by AHS and is admitted into a non-designated SL facility. In that case, the resident would have access to the AHS complaint mechanism. Finally, any complaint involving a physician can be submitted to the College of Physicians and Surgeons of Alberta as well as to the AHS Patient Relations Department.
Complaints related to health care services can also be addressed to the Alberta Health Advocates. Because they are familiar with the various regulations, they can assist clients in preparing their complaints to a local facility or to AHS. Alberta Ombudsman will accept complaints related to both health care services and accommodations. Its mandate and limitations are clearly outlined on the Before Filing a Complaint section of its website. These entities have been discussed in Sections 188.8.131.52 and 2.1.4 of this document. In practice, the Alberta Ombudsman will likely contact the previously-mentioned Alberta Health, the Office of the Seniors Advocate Alberta and/or AHS departments to investigate the issue. The Alberta Health Advocates and the Ombudsman may be the only viable complaint mechanisms when there are perceived fundamental deficiencies in the AHS complaints resolution process or in the Alberta Health Acts, Standards and Regulations. These include uncertainties and disputes in the interpretation of these documents. Any complaint involving a physician can be submitted to the College of Physicians and Surgeons of Alberta as well as to the AHS Patient Relations Department.
If the concern remains unresolved with the above mechanisms, the matter can be brought to the attention of the local MLA.
As previously noted, Client abuse falls under the Alberta Protection for Persons in Care Act. A good summary of this act is provided in a guide published by the Alberta government, which also describes how to report an abuse.
This section outlines some of the Alberta subsidies and Federal tax credits. It should be noted that some of these may be income-based and subject to eligibility criteria indicated on the government websites.
In addition to regular services provided free-of-charge by AHS, Alberta Health provides the following:
- Alberta Blue Cross Coverage for Seniors, which covers 70% of the medication cost with a maximum payment by the recipient of $25 per prescription. The medication must be listed on the Alberta Drug Benefit List.
- Alberta Aids to Daily Living (AADL), which covers a wide variety of suppliesfrom approved vendors including, for example, incontinence products (protective underwear) and wheelchairs, which can become quite expensive. As indicated in the AADL Eligibility guidelines, these supplies are provided free-of-charge to low-income Albertans receiving income assistance. Other Albertans pay 25% of the cost with a maximum of $500 per year. This benefit falls under the Alberta Aids to Daily Living and Extended Benefits Regulation.
Designated Supportive Living and Long-term Care facilities have an embedded subsidy that AHS pays directly to the operator for health care services. This greatly reduces the cost to the end-user. LTC facilities provide additional cost reduction by paying the full cost of listed medications and incontinence products (protective underwear). For DSL facilities, the cost of some supplies can be reduced by using the AADL program.
This Ministry provides:
- Alberta Seniors Benefit Program, which offers supplementary income to the Federal Old Age Security (OAS) and Guaranteed Income Supplement.
- Dental and Optical Assistance for Seniors, which deals with dental work, eye exams and surgery, as well as optical devices.
- Special Needs Assistance for Seniors (SNA), to fund the cost of appliances and some health and personal support.
- Seniors Property Tax Deferral Program.
- Seniors Home Adaptation and Repair Program (SHARP). This is a low-interest loan program.
The following programs from this Ministry are potentially useful for people with dementia and their caregivers, particularly if non-dementia disabilities are also involved:
- Alberta Adult Health Benefit, which provides dental care, eyewear, prescription drugs, ambulance services and diabetic supplies.
- Assured Income for the Severely Handicapped (AISH).
- Residential Access Modification Program (RAMP), which provides financial support for individuals with mobility challenges in their home.
Other programs include Health Benefits for individuals with low income for services not included in the standard Alberta Health coverage. The Guardianship & Trusteeship office, under the Ministry of Justice and Solicitor General, provides assistance to those who have no-one to help them as Power of Attorney or Personal Directive Agent.
In addition to the above subsidies, some private facilities may offer their own income-based subsidies for applicants who are not eligible for government-subsidized DSL facilities.
Some local organizations provide Community Access to People in Continuing Care grants for residents under 65 years of age in Long-term Care facilities. The grant allows residents to hire Companions to help them go out into the community and to participate in local events. The program can also bring events into the facility for residents with limited mobility.
Revenue Canada offers a variety of tax credits related to people with disabilities. These include:
- Disability Tax Credit: This is a non-refundable tax credit for people with a disability which can also be transferred to their caregivers. The application form needs to be filled out by a medical practitioner who will determine the level of disability, which plays a crucial role in the eligibility. This includes ability to prepare meals, feed and dress oneself. The application may go back 10 years. Recipients of this tax credit may also have automatically received the up to $600 COVID-19 One-time payment to persons with disabilities.
- Canada Caregiver Credit (CCC): This is available to a caregiver who supports a family member with a physical or mental impairment.
Assistance in obtaining information and applying for the above programs and subsidies can be obtained from the Alberta Home Care office, which has social workers that are well-versed in the available benefits and subsidies and can determine those that best fit a Client’s needs either at home or in a care facility. They can also explore “Added Care” funding for special and difficult situations. Walk-in services are also available at the local Alberta Supports office for provincial programs and at the Service Canada office for federal programs.
Lack of knowledge of available programs can lead to a significant financial cost. Some of the most commonly missed opportunities include:
- Staying too long in a non-subsidized facility. Due to the progression of the disease, the person with dementia will, at one point, qualify for a less expensive subsidized facility.
- Not taking advantage of the Revenue Canada Disability Tax Credit and Family Caregiver Amount (FCA) when applicable.
- Not making full use of the Alberta Aids to Daily Living (AADL) program for eligible supplies.
- Depending on income, not taking advantage of the various Alberta Seniors and Housing benefits.
The main objective of this document has been to provide guidance to caregivers on how to navigate the Alberta health care system for dementia. As with any large system, the system is very complex and difficult to navigate. Health care systems have their own particular challenges and complexities that are not necessarily unique to Alberta. This document has been written by a caregiver who has represented an AHS Client with dementia. By obtaining input from other caregivers, this perspective has the advantage of presenting the system not only as it was originally designed but, also, as it actually works in practice. The navigation process involves not only health-related government departments but also other ministries and external non-profit organizations outside the Alberta Health ministry. The main challenge for a caregiver writing this document is to obtain information from a wide variety of government departments. The Alberta government has extensive websites, which have been extremely useful for this document. On the other hand, obtaining additional detailed information by contacting the government departments directly can, in some cases, be significantly more challenging. Either Alberta Health or AHS could write a document on the same topic with the assistance from other ministries. Such a document would present a different, complementary and useful perspective written by authors with an easier access to government information. Undoubtedly, the most important perspective would come from people with dementia as they progress through the health care system. Regrettably, the nature of dementia makes this information difficult to obtain except in the earlier stages of the disease.
In order to fully address issues related to dementia, organized advocacy is urgently needed. The Alzheimer Society and its various local offices provide important information and emotional support to caregivers. Although this society may address broad issues through its Board, it does not typically get involved in specific advocacy activities related to the dementia care provided by local Home Care, Supportive Living and Long-term Care facilities, or in hospitals. For this, caregivers need to form their own advocacy groups, often at the local level. The Alzheimer Society can provide information to support such groups. It is also important to include people with dementia in the advocacy process. An important step in this direction is the recent formation of Dementia Advocacy Canada, which has been very active in providing webinars and resources with an executive that includes people living with various forms of dementia. Similar local groups are also required to address issues involving Home Care, Supportive Living and Long-term Care facilities. For the latter two, Resident and Family Councils can be very useful in addressing accommodations and health care issues with local management. Unfortunately, specific issues related to the care of people with dementia are not as easily addressed at Council meetings.
In addition to regulations related to their operation, DSL and LTC facilities must follow the Continuing Care Health Service Standards (CCHSS). These standards, which also govern Home Care, were updated in July 2018. They are extremely well-written, organized and easy to follow. From a Client’s point of view, they offer important information concerning not only the required health care services but also the Client’s rights. The clauses related to the Interdisciplinary Team are of particular interest. As discussed in Section 184.108.40.206 of this document, the Definitions section of the CCHSS standards define the Interdisciplinary Team as follows:
“A group comprised of Health Care Providers, the Client or the Client’s legal representative, if applicable, and other individuals of the Client’s choosing, who meet for the purposes of planning, coordinating and delivering Health Care services to the Client. The Health Care Providers on the Interdisciplinary Team are determined by the Client’s assessed Health Care needs.”
The Client plays a vital role on the team and, according to the standards, is involved in key areas and decisions. These include those related to the
- Care plan
- Client’s access to information
- Risk management
- Medication management
- Nutrition and hydration
- Restraint management, including the use of antipsychotics
For Clients with dementia, the above participation in the Interdisciplinary Team is usually done through the caregiver acting as the Personal Directive Agent. This participation is particularly important for medications, including antipsychotics, and in the formulation of the Care Plan that is prepared by the Home Care Case Manager for DSL facilities and by the facility nursing staff for Long-term Care. The emphasis on involving the Client is consistent with the intent by Alberta Health and AHS to have a Client-centered health care system. Unfortunately, Clients and their caregivers are usually not aware of these regulations or the scope of their rights to actively participate in the care process. This is to a great extent due to the fact that facilities and AHS Home Care often do not make the required effort to inform their Clients of either the CCHSS standards, the existence of the Interdisciplinary Team, or the Client’s role on that team. As a result, key decisions are often made and care plans developed with insufficient input and review on the part of the Client or caregiver. Hopefully, this document will assist in the dissemination of information concerning these important rights for AHS Clients with dementia.
The existing Alberta health care system and, in particular, the CCHSS standards can be used in their current form to make significant improvements. The following recommendations are proposed:
- Client awareness of regulations: Clients should be made aware by DSL and LTC facilities and by Home Care of the CCHSS standards and the important role that the Client and caregiver can play in the Interdisciplinary Team. This could be done by providing a copy of the CCHSS regulations to the Client or caregiver along with a separate Policy and Procedure document that clearly outlines their role on the Interdisciplinary Team. This should occur when the Client is admitted into a facility or registers with Home Care. Similarly, caregivers should be encouraged to make themselves aware of the CCHSS regulations and to inform DSL and LTC facilities and Home Care when these regulations are not being followed.
- Public availability of CCHSS audit results: For the sake of transparency, it would be useful for Alberta Health or AHS to make CCHSS audit results publicly available on a website for individual DSL and LTC facilities and Home Care offices. This is currently only being done for the accommodations standards.
- Local Advocacy and Councils: Local advocacy groups for dementia should be formed by caregivers and other interested parties to complement the work being done by the Alzheimer Society and Dementia Advocacy Canada. DSL and LTC facilities should encourage residents and their caregivers to form their own Council as described in the Resident and Family Councils Act. Since Home Care falls under the same standards, it is important for its Clients and caregivers to be able to express their needs and concerns through their own local Home Care Council. The onus is, of course, on the Clients and caregivers to actively participate in the Council. Council members, on the other hand, are responsible for organizing and running their meetings, making themselves aware of the regulations and addressing the needs of all Clients and caregivers requesting help from the Council.
The underlying premise in the above recommendations is that Alberta Health, AHS and its Clients wish to have a truly Client-centered system. DSL and LTC facilities, Home Care, along with their Clients and caregivers, share a responsibility in ensuring that this is indeed the case. This requires not only a commitment to understand and follow the regulations but, in some cases, a shift in perspective to a Client-centered mindset and culture by all those concerned.