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Our Future is Aging: Advancing Knowledge Series

THE DEMENTIA JOURNEY:

SUPPORTING AWARENESS OF FAMILY CAREGIVING

 


The Issue - Family Caregivers and Dementia…

In 2011, approximately 750,000 people in Canada were affected by dementia. By 2031, this number is expected to rise to 1.4 million. There is growing public awareness of the complexity and increasing prevalence of dementia, the social and economic costs of dementia, and the inadequacy of health systems to respond appropriately to the needs of older people living with dementia and their family caregivers.

 

NSCA Contribution to Understanding the Issue…

Through research, education and outreach, the NSCA has raised awareness of the critical role that family caregivers play in the dementia journey, and the impact that family caregivers can have on dementia care, as well as the impact caregiving for someone living with dementia can have on families. Below are a few of our recent initiatives:

Towards Understanding: A Dementia Strategy for Nova Scotia In 2015, the release of provincial strategy marked a milestone in dementia awareness in Nova Scotia. It serves as a valuable resource for the development of similar initiatives in the country. The strategy emphasizes the importance of relationships in shaping people’s experiences of the dementia journey. The Strategy advocates for enhanced understanding of dementia, early diagnosis and better coordination of care, as well as improved communication and collaboration among care providers and people with dementia and their families. NSCA supported the development of the Strategy through gathering input from Nova Scotians and providing advice through the process.

 

Understanding Caregiver Assessment for Older Spouse Caregivers A study that involved nurse trainees using the C.A.R.E. Tool with 100 spouses from NS and PEI who have a partner living with dementia. The study aimed to understand whether timely and comprehensive assessment of caregivers of persons with dementia can have an impact on the type of interventions introduced, and thereby an effect on caregivers’ health and well being. The study also examined the extent to family caregiving is present in health care professionals’ training.

 

Working CARERS Program A study that involved examining the conditions required to implement the Working CARERS Program in rural communities. The CARERS Program, an 8 week intervention program developed by researchers at the Reitman Centre, Mount Sinai Hospital, is intended to provide practical skills and emotional support to caregivers of persons with dementia. NSCA implemented the project activities in two rural communities in Nova Scotia enabling four individuals to receive training from the Reitman Centre to deliver this program.

 

Dementia: Understanding the Journey is a coordinated education program focusing on the care provision for persons with living with dementia. It is a required component of training for Continuing Care Assistants and Practical Nurses in Nova Scotia. The program has an emphasis on understanding the experience of other partners in care such as family and friends and the importance of relationships in shaping people’s experiences of the dementia journey. Over the years, the NSCA has had an active role in ensuring this education program is updated with current knowledge on dementia and care practices.  

 

What We’ve Learned…

·        Our work with the C.A.R.E. Tool suggests a need to recognize family caregivers both as partners in care, and clients with distinct needs. Training in and administration of the C.A.R.E. Tool gave nurse trainees first-hand exposure to the lived realities of spouses supporting their partner with dementia, and greater appreciation of the complexity of caregiving.  The study also found that health care professionals receive little, if any, education about family /friend caregivers as part of their training and that there is a need to broaden health care professionals’ understanding about the important role of family/friend caregivers.

 

·         The feasibility study with the Working CARERS Program revealed the benefits of this type of program for caregivers in Nova Scotia and the challenges working family caregivers face in participating in programs. The study offers insights into factors to consider when developing and implementing supports, services, and programs.

 

·         Through our various research, education and outreach initiatives we continue to recognize the ongoing need for education throughout the system on best practices for supporting persons living with dementia and their family caregivers.

 

 

More Information…

In addition to reports, brochures and other materials related to this topic you can find available at www.msvu.ca/nsca, we offer the following resources you may want to check out!

 

Dementia in Canada: A national strategy for dementia-friendly communities http://www.parl.gc.ca/content/sen/committee/421/SOCI/Reports/SOCI_6thReport_DementiaInCanada-WEB_e.pdf

 

Conversations with my mother https://www.youtube.com/watch?v=4W3lPUXIi-0

 

Alzheimer Society Nova Scotia www.alzheimer.ca/ns