A Virtual Community of Practice for Family and Friend Caregivers of Persons Living with Dementia

What is this Study about?

The aim of this study is to support family and friend caregivers by creating an online community of caregivers called a Virtual Community of Practice. We will create and evaluate a Community of Practice to see if it can improve the quality of life, skills, and confidence of caregivers in engaging persons living with dementia in social and stimulating activities. The Community of Practice includes online information and regular group meetings. Information gathered will help to provide caregiver support by providing them a safe and informative place for them to learn and interact with other caregivers.

What Will Happen in This Study?

For Phase 1, persons living with dementia and caregivers will co-design the Community of Practice

website and resources.

They will:

(a) participate in two 60-minute workshop co-design meetings with other research partners by Zoom;

(b) participate in one 30-minute follow-up interview; and

(c) complete surveys.

For Phase 2, caregivers will be supported through the Community of Practice to deliver a personalized

program called Namaste Care.

They will:

(a) participate in one 60-minute training session by Zoom;

(b) deliver the Namaste Care program for 3 months (all supplies provided);

(c) complete brief questionnaires; and

(d) participate in one 30-60 minute interview.

Who is Eligible to Participate in this Study?

Meet the following criteria for Phase 1:

Person living with dementia:

(a) aged 40 years or older with a diagnosis of dementia; and

(b) currently living in Canada.

Or

Family or friend caregiver:

(a) aged 18 years or older and with experience in the last five years providing physical, emotional, and/or psychological support for a family member or friend living with dementia at home or in long-term care;

and

(b) currently living in Canada

Meet the following criteria for Phase 2:

Family or friend caregiver:

(a) aged 18 years or older and currently providing physical, emotional, and/or psychological support for a family member or friend with dementia at home or in long-term care;

(b) currently providing at least four hours of support a week for a person living with dementia; and

(c) currently living in Canada.

(d) must speak English

Legal Disclaimer

Any materials or links provided herein are strictly for informational purposes only. The Alzheimer Society of Canada does not endorse nor recommend any of the manufacturers, products or institutions mentioned in any of these links or listings as suitable or appropriate for your particular situation or circumstances and disclaims any liability with respect to representations, warranties, including fitness for an intended particular use or purpose, and all other claims relating thereto, all of which remain strictly with the manufacturer or institution.

In no event shall the Alzheimer Society of Canada or any third parties mentioned on the website be liable for any damage (including, without limitation, incidental and consequential damages for personal injury/wrongful death, lost profits or damages resulting from lost data or business interruption) or personal injury (including death) resulting from the use, misuse or inability to use any activity, product or service mentioned herein, whether based in warranty, contract, tort or any other legal theory.

Everyone considering participating in any activity is encouraged to speak with their own doctor or health-care team before participating in any activity that may impact their health or well-being.