Today’s guest blog is from David Harvey, the lead in Public Policy for the Alzheimer Society of Ontario. Over the past two years, David has been working in partnership with the Ontario Government to develop a robust Dementia Strategy. He is also co-lead of the brainXchange, a national learning resource and is a member of the Steering Committee for Behavioural Supports Ontario.
There are over 220,000 Ontarians living with dementia and by 2020 this number will rise to a quarter of a million people. At some point in our lives, virtually all of us will be touched by dementia. It can happen in many ways but one likely way is that we may be called upon to serve as a care partner to someone we know who has developed dementia. That person may be our life partner, a parent, a sibling, or a friend. The demands on us may vary with the relationship but we will have a significant role to play.
I sense a growing awareness of the importance of keeping up relationships as dementia develops, even though these relationships may be continuously redefined as the condition progresses. Many of us are gaining a better understanding of how dementia affects our relationships and with this, are able to adjust and discover new ways of being together. Learning to adjust to these new dynamics and demands can be challenging. In fact, research has shown that those caring for someone with dementia provide 75% more care hours than other caregivers and experience nearly 20% greater stress.
Governments are becoming increasingly aware that care partners play a significant role in helping people with dementia continue to live lives imbued with purpose and satisfying activities. As governments around the world develop new policies to mitigate the impact of dementia, policies for care partners are always in the mix.
Ontario is in the midst of doing just that, the Ministry of Health and Long-Term Care is currently developing a Dementia Strategy for Ontario and the Alzheimer Society is pushing for supports that work for care partners. Respite services, as they are currently delivered, often seem to fall short of the mark in terms of meeting people’s needs. Funds are currently being expended with the intention of supporting care partners, yet stress levels among this group continue to rise. At the same time, there are some great examples in Ontario and elsewhere of how things can be done differently and of how people’s experience of being a care partner can be improved.
The Society is promoting supports that offer care partners more choice, flexibility and control over the supports and services offered to them. More than money is needed to improve respite services so that they will make a difference. We propose to identify the services that seem to make a difference for families caring for a loved one living with dementia, understand the basis for their success, and then make them available to everyone who needs them. A principle-based approach that values the person and care partner is the foundation for assessing service models.
“Too little, too late” is a familiar phrase among care partners today.
We have a window of opportunity to show Minister Hoskins and the Ministry of Health and Long-Term Care that Ontario needs a strong and fully funded dementia strategy.
Join us at www.actionfordementia.ca for updates on our ongoing efforts to encourage a dementia strategy that will make a difference in the lives of care partners.