June 14, 2016 – Maria Howard, Alzheimer Society of BC – Understanding and Living with Dementia

Maria Howard

As the population of our province ages, we will all be affected by dementia – as friends and family members and neighbours. In this introductory session Maria Howard, CEO of the Alzheimer Society of B.C., will speak about understanding Alzheimer’s disease and other dementias, what to expect along the dementia journey and how the Alzheimer Society of B.C. can help.

Since joining the Society in 2014, the five year strategic plan Maria has set for the Society is well under way. The strategy includes ambitious goals to expand the First Link® program across the province, implement Dementia Friendly Communities and augment funds for research.

Maria is a dynamic and strategic thinker with both provincial and national board governance experience. Her decades of leadership in the health-care sector and her commitment to operational excellence fit with the Society’s ambitious strategy. She holds a Master’s degree in Psychiatric Rehabilitation from Washington University and an MBA from Athabasca University.

Maria lives in Vancouver with her husband and two children and enjoys biking, swimming and spending time with her many pets.

Notes on Maria Howard’s Presentation

Orrin Webber introduced Maria Howard, CEO of the Alzheimer’s Society of BC (ASBC). Maria thanked us for inviting her to start a conversation about dementia, including Alzheimer’s, the most prevalent form of dementia. She began her presentation with a story – one of several she told to help illustrate issues around living with dementia and creating dementia-friendly communities.

Bill was diagnosed with Alzheimer’s shortly after retirement. He continued living as before, including playing cards with friends on Saturday evenings. One evening, on the way home, he did not recognize where he was, began feeling nervous and called his wife from a gas station. They decided he should sleep in his car until morning, hoping sleep would help him remember his way home. This incident made Bill’s family begin to worry about what could happen in the future.

It was people like Bill’s family who united to form the ASBC in 1983. The ASBC supports people with all forms of dementia, their families and care partners to help them live the best quality of life and have the information they need to make the best decisions for their families. It supports research into a cause, biomarkers and other diagnostic tools, and a cure, sponsoring a professorship at UBC. It educates the public to help people better understand dementia and how they can help create dementia friendly communities.

The ASBC partners with the BC Ministry of Health on a Dementia Registry. The registry provides quality data on where the 70,000 British Columbians with dementia live, what their age is, what level of education they have and more. Approximately 10% are under 65 years old with some affected as young as in their 40s. The numbers of those with dementia will grow as baby boomers age and as life expectancies continue to rise.

While there may be some genetic factors involved in dementia, it is not primarily genetic. Nor is it a normal symptom of aging. It is a progressive terminal and unpreventable disease, and there is no known cure. However, a dementia diagnosis is not the end of quality of life. Maria emphasized that every member of the community has a legacy they have built, care about and want to continue, whether it’s family, career, volunteering or artistic expression. The ASBC works to start the conversation with people as early on in their journey as possible, to help them understand what is happening and help them make the best decisions for their families.

The First Link program enables the ASBC to help people across BC work through their diagnosis and next steps. Because people who just learned of their diagnosis do not usually want to talk about it at first, the program keeps trying to connect with patients, their families or care partners until they are ready for some form of support. It helps support difficult conversations, including questions about driving, living at home, being independent, eventual transition to a care home if required and decisions around estate planning and wills. These are very important issues and better addressed when not in crisis mode. The program also includes a help line for information and support.

The Dementia Registry shows over 60% of those living with dementia are living in community, not in residential care homes or assisted living. The ASBC and the Public Health Agency of Canada promote the idea of dementia-friendly communities, which recognize that quality of life does not end with a dementia diagnosis and that everyone wants to live and participate in a community.

Maria gave a great example of dementia-friendly community. Mary lost track of where she was going as she was going get a prescription filled. Rather than going to the pharmacy, Mary went to the bank. The teller could have done any number of things when Mary presented her prescription, but handled the situation perfectly. She called Mary’s doctor to inform him and Mary’s family, called the pharmacy across the street to let them know, then walked Mary across the street to the pharmacy, enabling her to safely get her medicine, while the doctor’s office could involve Mary’s family. She showed compassion and awareness and helped protect Mary from harm and distress.

The ASBC is unique amongst many health care societies with 80% of its funding coming from donations. Only a small portion of its funding comes from the Ministry of Health for the First Link program. The ASBC does this by design: because government funding priorities frequently change, the ASBC prefers to rely fundraising to ensure consistent services to those affected by dementia.

Questions and Answers from Maria Howard talk at Probus Vancouver, June 14, 2016

1. My mother uses Aricept, which costs $5/day. Is this medication and others now covered by MSP and if not why?

Over past 2 years, the ASBC has been part of a committee in partnership with the Ministry of Health and Pharmacare BC, to bring the voices of people living with Alzheimer’s and dementia and families. These drugs have been looked at very carefully. At this time, it’s our understanding that Pharmacare continues to cover number of drugs for dementia. Pharmacare has a criteria-based approach for coverage. Any of you who have walked through the Pharmacare world will know there are a number of different levels and special authorities that are required for coverage. As it looks at this moment, there is potential for this medication to be covered, but it is still important to review this with one’s physician and do the necessary application to demonstrate the criteria Pharmacare requires.

2. How do you differentiate between normal memory loss and dementia? When do you know the difference?

We all have those moments we forget something. The difference is that with natural memory loss from aging, things tend to come back to you eventually (e.g., where did I put the keys?). Memory loss is sporadic. The turning point for dementia is when things that are very much scripted in your life patterns and programming become unavailable to your memory (e.g., not remembering the way home on a route you drive regularly). Maria shared a story about a retired Royal Canadian Air Force pilot in Saanich who forgot how to get home, but came up with a clever way to figure it out. Once he began to panic, he asked himself, “What would I do if I was flying?” He drove up to the highest mountain in Saanich and used the sun to navigate and find his way home. He was really proud that he was able to take a difficult situation and work it out, while being affected by his Alzheimer’s.

3. At what point can Alzheimer’s be determined from a neurological perspective as different from dementia?

Dementia is a collection of symptoms of neurological changes and Alzheimer’s is the most prevalent form of dementia. The difference between Alzheimer’s and other dementias is clear when looking at brain tissue once someone has passed away. However, we are now beginning to have a number of different scans that allow us to learn more about the living brain, including PET scans, which are being pioneered at UBC to identify Alzheimer’s in the living brain. A spinal tap is still a good way to provide a diagnosis. But, currently until someone has passed away, we are not able to conclusively determine if they have Alzheimer’s.

4. There is currently no known means of prevention or a cure, but are there tools to slow the progression of Alzheimer’s and dementia?

There is a lot of research into whether things like exercise, diet and brain games can help prevent or slow the progression of dementia. A number of studies show exercise to have an influence on slowing the progression of dementia. The research on brain games, however, is currently not conclusive.

5. We know that the most devastating impacts of dementia are to caregivers. There is a major need for society to appreciate what the partners of those with Alzheimer’s and dementia have to cope with. How does the ASBC plan to help address that?

The ASBC spends the majority of its time supporting caregivers. People with the disease become less able to participate in a number of different support groups as their disease progresses. We offer a number of different programs to caregivers. On a federal level, legislation to recognize that employees who care for those with dementia may need leaves of absence to care for them. Leaves of absence, Employment Insurance and tax benefits for caregiving are significant shifts that help recognize and support some of the impact on caregivers. The BC health care system is trying to shift to more inclusive model of care, which recognizes that people transition through a number of different stages of dementia and go through each stage differently. Efforts are being made to keep couples in residential care homes who both need different types of care together in the same housing unit. Support groups continue to be critical to giving caregivers the ability to reach out when they need support and the opportunity to talk to those going through similar experiences. Our efforts toward creating dementia-friendly communities is also meant help caregivers. If you feel your community is a safe place for your loved one to walk around, you will not worry as much because you know people in the community will be watching.

6. Since we know the disease starts long before detection, what steps are being taken to be able to detect the disease much earlier on?

The biggest focus of current research is on finding biomarkers to help with early detection. The ASBC has a professorship out at UBC and one of the recipients is researcher focused on biomarkers. However, it is difficult to get enough people to participate in clinical trials. Many people do not want to know if they have the disease or think through its implications. We did a research forum with UBC in January and asked the audience what the most significant side effect they would be willing to endure in clinical trials for a new treatment. The majority in the room, who were already interested in the topic, said the most significant effect they would be willing to endure would be a headache. The progression of research is going to go very slow if that’s the most people are willing to endure in clinical trials. We have to talk about this more as a society, to help people understand dementia not a natural part of aging; it is not normal. We have to keep pushing hard for research to find a cure and people need to stand up and participate in that research.

7. What is the connection between Alzheimer’s and dementia & genetics or lifestyle?

It is potential that some families may carry a gene which gives a higher propensity to get dementia, but that still does not necessarily mean that a person with the gene is going to get dementia. On the lifestyle side, nothing is conclusive yet. There is lots of speculation on the internet, but that should not be given much weight. Right now the thinking is dementia is related to the ability of cells to divide in the brain. How this links to lifestyle is unknown.

8. Has anyone used dementia as a criminal defense?

Not to my knowledge. We do know that people in the criminal justice system experience dementia at similar rates to the rest of the population.

9. With the newly court-recognized right to assisted dying, the law has put out two key requirements: that one is experiencing irremediable suffering and that one is near the end of life. How will this new legal reality affect dealing with dementia? I’m struck by the image of the husband in the film Amore, who uses a pillow to end the life of his wife, who was suffering from dementia.

This is a very difficult and complicated conversation from a medical and social perspective. The issue for people living with dementia is that while they may have a good understanding of how their disease is going to progress, they do not know exactly what symptoms they will get and when they will be affected. With regard to assisted dying, people with dementia are on both sides of the debate. Some feel that if they cannot recognize their families, they do not want to live. Others feel that they still have an enjoyment of life, as long as they are not in great pain and distressed, they want to continue living. Families often switch their perspectives on this as the disease progresses, both ways. We cannot ever presume that one individual’s experience should direct everyone else’s.

10. Is there a relationship between Alzheimer’s and the physical condition of a person?

Some experience physical changes in mobility and ability to do a task. Varies.

 

 

 


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