Question: We are caring for a person in our family with dementia and are receiving some, but limited, homecare and respite. While we have been purchasing some private service we are still finding that care is fragmented and insufficient. How can we advocate for improved access to services?
Answer: With the exceedingly large new numbers of dementia cases occurring in Canada, due to our aging population, the Ottawa Citizen (July 23, 2012) published an excellent article recently commenting on an all too familiar patchwork of badly organized and pieced together services in the Champlain area.
Today, most Ontarians with Alzheimer’s disease are cared for in their homes and families like yours are often faced with care gaps, problems with information sharing and inadequate social support.
Individuals with dementia are often admitted into hospitals for long, expensive and futile stays and or premature admission to long term care.
No place to go
This occurs not because they need acute medical care, but because they have nowhere else to go.
Champlain’s concerns of inadequate care are not isolated to their region.
According to a recent report by the Alzheimer Society of Ontario, dementia results in total socio-economic costs to Ontario of $7 billion a year, threatens to bankrupt our health care system and has obvious impacts on individuals, families, employers and society as a whole.
While prevalence of dementia varies by provincial regions, that variance is associated with the increasing average age of the community.
Muskoka, being a draw for many retirees, will also continue to experience high growth of dementia cases and many families such as yours are struggling with providing adequate care.
Today, about 100,000 Ontarians with dementia have family caregivers, yet, less than 10 per cent of these caregivers have respite support.
Our numbers of dementia cases are only going to increase and without continued expansion of dementia care programs such as increased extra in-home help, respite and day programs specifically for persons with dementia, Muskoka will continue to have difficulties providing adequate care in the community.
And here lies just one of the dilemmas; more supports are needed which cost more money.
The province is obviously struggling to reallocate funds and produce the necessary services for families with dementia.
So, what are the possible solutions?
Continued advocacy is a start. In May, 2012, the Alzheimer Society of Ontario presented their Focus ON dementia blueprint that outlines five achievable solutions to improve the quality of care for Ontarians with dementia and help them live more independently longer.
Ontario’s Health Action Plan
The solutions reflect key commitments outlined in Ontario’s Health Action Plan and 2012 Budget and include:
• Investing in self-directed care for people with dementia, including their caregivers
• Improving access to primary care, early diagnosis and community support such as ASO’s First Link® program, a referral program connecting Alzheimer patients with appropriate local health and medical services
• Increasing dementia workforce skills and training
• Focusing Care Co-ordinators, announced in Ontario’s Action Plan for Health Care, on the needs of high-risk seniors
• Risk reduction and promotion of brain health
Writing letters from families such as yours to your MPP addressing these key areas will hopefully help.
Assisting families with the provision of care will produce substantial OHIP cost savings.
Likewise, caregivers also have an obligation to ensure that they are receiving all the supports and education such as First Link that is available through the local Alzheimer’s Society.
The Alzheimer Society of Muskoka believes the sooner we improve our understanding, the better we’ll be able to provide care.
Please call or email with your questions or concerns and we will try to get them published in an upcoming column. Call 1(800) 605-2075 or (705) 646-7694, or email firstname.lastname@example.org.
Karen Quemby has completed her Master’s degree in Gerontology specializing in Alzheimer’s disease.
She is presently the Education and Family Support Coordinator for the Alzheimer Society of Muskoka as well as a part time instructor for Georgian College and Nipissing University.