Guide for Dementia Caregivers

This website provides the “Where do we go from here?” document as a guide for dementia caregivers in Alberta. “Useful Links” and a Blog page complement this document to further assist caregivers.

Where do we go from here?

The main objective of the “Where do we go from here?” document is to help dementia caregivers navigate the Alberta health care system.  The path through the system includes the first appearance of dementia symptoms, the diagnosis, home care, as well as supportive living, long-term and palliative care.  The document first provides information on the overall Alberta health care system and then describes possible paths through the system.  It presents:

1. The overall health care system structure relevant to dementia.
2. The roles of the various government departments and agencies and non-governmental organizations (NGOs).
3. The roles of doctors (GPs, psychiatrists, neurologists and geriatricians) in diagnosing and managing the disease.
4. The operation of Alberta Home Care as well as 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:

1. Information publically available on government and NGO websites or as hardcopy documents.
2. Communications with various government agencies, NGOs and facilities.
3. 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 helps to describe the system as it actually works rather than how it was initially designed.

There are many ways dementia caregivers can read the “Where do we go from here?” document.  They may:

1. Read it from beginning to end.
2. Start with Section 3, “The Path”, which describes the path through the system,
3. 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 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.

It should be noted that, 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.  Observations on how the system actually works locally may differ from other regions.  Also, provincial regulations, policies and procedures, government department structures and available subsidies and tax credits are constantly changing.  Consequently, this document and website do 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, they are not intended to provide medical, legal or financial advice.  Readers should refer to professionals on these matters.  The document and website are therefore “living” communications that should be viewed as a “best effort” to serve the growing community of dementia caregivers in Alberta.

Useful Links

This document contains a categorized list of the links referenced in the “Where do we go from here?” document.  More information on useful links can be obtained by selecting the “Links & Resources” category in the right navigation menu of the Blog webpage.  This will display posts related to the category.