When I last spoke with you, I asked what you thought about dementia research in Canada and the challenges we face together.

Supporters like you, speaking from your own personal experience, agreed that this isn’t a tomorrow problem for Canada—it’s our problem today!

Today, I’m reaching out again to give you an update and ask for more of your insights.

An update on the national dementia strategy

As CEO of the Alzheimer Society of Canada, I am pleased to have been invited to co-chair the Minister of Health’s Ministerial Advisory Board on Dementia.

The Advisory Board was established earlier this year to advise the Minister on the development of Canada’s national dementia strategy. This autumn, we will be reviewing a draft and, by the spring of 2019, I look forward to seeing a fully formed, fully funded strategy.

The Advisory Board includes two individuals with dementia and two caregivers. Many board members, including myself, have had or currently have family members with dementia. I can assure you that the voices of those with lived experience with dementia are very present.

I can also share with you that the Minister of Health, the Honourable Ginette Petitpas Taylor, has an intensely personal interest in the outcome of this initiative, as her own mother lives with dementia.

There is widespread support for a national dementia strategy, as long as it results in real progress and a positive impact on people’s lives.

To have the impact needed, it will take a strong budget commitment by the government, but I do believe that the commitment to action to combat this national health crisis is real.

The dementia community across the country is following the development of the strategy with keen interest – researchers, health-care practitioners, people living with dementia and caregivers alike.

Last May’s national dementia conference focused around three key pillars, so we anticipate that they will be considered as elements of the national strategy:

1. Greater investment in dementia research, health-care and community services.
2. More meaningful help for caregivers and people living with dementia.
3. Education and awareness programs that counter stigma against dementia.

The Alzheimer Society of Canada is actively supporting each of these pillars, but there is still much work to be done…

Greater investment in dementia research, health-care and community services

In recent years, researchers have become increasingly convinced that we can reduce the risk of developing dementia.

Their research points to the disease process starting at least twenty years before symptoms appear – perhaps as early as when a person is in their 30s or 40s.

By the time the initial stages of Alzheimer’s disease are identified, it’s already too late for any existing therapies to slow or stop the progression of the disease. Risk reduction, through lifestyle choices and other prevention therapies, has to happen early on. It’s the only way we will make headway in reducing the prevalence of dementia until effective disease-modifying therapies are discovered and made available.

Knowing this, researchers are looking to better understand what causes dementia. They are assessing affordable imaging and blood tests that could be made available through the health-care system, decades before outward signs of cognitive impairment appear in high-risk individuals.

But even if we could, by some miracle, stop new cases of dementia developing tomorrow, there are currently over a half million Canadians living with its devastating effects. We are confronted with a health-care system already overburdened with meeting the care needs of people living with dementia at all stages.

So, what can we do about it today?

Well, research isn’t all about 20-year timelines. Help for today can be found in quality of life research – and it’s becoming increasingly important. Evidence on lifestyle, nutrition and the effective approaches to care and services can be put into practice and have a real impact much more quickly.

More meaningful help for caregivers and people living with dementia

Let’s look at the importance of caregivers. It’s substantially less expensive for people with dementia to live at home with a caregiver, rather than in a long-term care home – and enormously more economical than having them occupy acute care beds in hospitals.

However, caregivers are not being adequately supported:

• They experience high stress levels as a result of caring for their family members. We know from research that caregivers themselves are at a higher risk of developing dementia and other major health conditions due to this added stress in their daily lives.
• Personal respite is also an issue. Caregivers get less sleep and don’t have time to take care of their own needs. Due to the lack of alternative care options, they are more likely to eat poorly, have financial concerns and take no holidays.
• It’s difficult to balance caregiving responsibilities with work; caregivers find that they’re forced to take time off work for medical emergencies, appointments and extended leaves. All of this carries a productivity cost and impact on Canada’s economy.

If a caregiver’s own health is failing as a result of these pressures, they are clearly not getting the support they need. There’s a huge cost involved – both for the individual and society.

We have the evidence, but that knowledge has to translate into action – whether it means more home care, more respite care or access to more day programs. We must change current practice in order to achieve the needed results.

Long-term care plays an essential role in the mix. There are many reasons families may decide this choice is needed and appropriate for their situation. It’s estimated that 70 to 80% of people living in long-term care homes have some level of cognitive impairment – including Alzheimer’s and other forms of dementia.

The Society is funding several related studies through the Alzheimer Society Research Program. Quality of life research helps support long-term care homes through staff training and the development of best practices for care of those living with dementia.

One current study looks at how care home staff interact with residents during mealtimes. How they engage at mealtimes can make a substantial difference in the life of a person in long-term care. It may only be one element of that life, but not an unimportant one when you consider there are three meals and two snack times a day.

The actions that come out of research studies such as this are vital. Currently, there are too many people struggling unnecessarily, people with dementia and caregivers alike. We can help them by putting findings from research into practice.

Education and awareness programs that counter stigma against dementia

Ultimately, the goal of every researcher’s work in this field is to improve the quality of life for all individuals affected by dementia. Translating that knowledge into action by changing approaches and practices is the hard part – it involves a financial commitment. Fixing these things is expensive.

It’s hard to turn on a dime. It’s a huge challenge. There’s a feeling that things aren’t moving fast enough. As an organization, we hear that sentiment all the time from clients who look to us for additional services, services that we can’t always deliver on.

A lot of energy is required to cut through the resistance to change with the systems currently in place. Education programs and awareness campaigns can help fight stigma, move public opinion and gain support for change.

I believe each one of us in the dementia community must strive to ensure that the voices of those with lived experience of dementia are heard and have the desired result. Otherwise, we may fail to deliver on what people with dementia and their caregivers really need – the programs that will have the greatest positive impact on their lives.

Sharing your experience and insights on how we can improve help for today is tremendously valuable. Whatever form your participation takes is a welcome contribution to the conversation.

Please make sure that your voice is heard. I look forward to hearing back from you.

Warm regards,

Pauline Tardif