Professor Carole Cohen is a University of Toronto Professor of Psychiatry and Head of the Division of Geriatric Psychiatry. She is an affiliate scientist in the Evaluative Clinical Sciences, Hurvitz Brain Research Program at the Sunnybrook Research Institute. Professor Cohen’s work and research is focused on helping patients, their families, and their professional caregivers manage dementia diagnoses making her an expert in dementia service care. She is well known for her involvement and advocacy for dementia patients in legal capacity and consent issues.
We were fortunate to have the opportunity to interview Professor Cohen about her work:
1. Can you tell us about your research with dementia caregivers?
My research started out with a study examining risk factors for individuals with dementia moving from home into another care setting. As part of this study, I had the opportunity to visit people with dementia living at home and talk with those assisting them. I became interested in the caregiver’s experience and how it affected not only their health but the experience of those they cared for. It became clear that not all caregiver experiences were negative and many found great comfort and meaning from their caregiving role. I worked with others to better understand these positive effects of caring and how they might influence caregiver decisions. I was also part of a team that studied pathways to diagnosis for families from different cultural backgrounds across Canada.
2. What is the most rewarding part of your work in this field as a scientist?
For me personally learning from individuals with dementia and their families and being able to share my knowledge with others is the most rewarding aspect of my work. I enjoy translating research findings into accessible language to help clinicians, policy-makers and other researchers better understand the dementia experience.
3. How has dementia management evolved in your years of working as a researcher?
Dementia management has evolved dramatically since I started practising. Whereas it was initially difficult to find dementia specific services, they now exist everywhere in Ontario. They are more likely to put the individual with dementia at the centre of care planning with programs for those with special needs (such as early-onset dementia) and focus on personhood and dignity. Support groups and advocacy groups for individuals with dementia are relatively new. Holistic approaches that focus not only on anti-dementia medications but diet, exercise, appropriate activities are more readily available. Programs also provide assistance for longer periods of time with earlier diagnosis and increased attention to needs at the end of life.
4. Dementia is an illness that not only impacts the individual, but it also impacts family members. From your experience, what advice would you give to our readers who have a loved one with dementia?
Family members play a vital role in supporting individuals with dementia. It can be a rewarding and exhausting role. In dementia care families have to simultaneously optimize the current situation and plan for a future when the disease will progress and the person with dementia needs will change. I would urge family members to be mindful of three major areas they should address. Firstly, they need to understand what dementia as an illness means, how it affects their family member and how it is likely to progress. Education and knowledge are important if one is to understand why a relative is behaving in certain ways and how to best support them. Secondly, family members need to address their own psychological and physical needs – caregiving can be stressful and caregivers need to take time for themselves and learn how to cope with these demands. This may mean learning new techniques such as Mindfulness, accessing individual or group counselling and paying attention to their physical health, diet and exercise. This leads to the last part of the triad which is asking for help and ensuring that caregivers have adequate social support. Caregivers need to build a support team of professionals, family and friends and learn how to effectively ask them for help.
My research started out with a study examining risk factors for individuals with dementia moving from home into another care setting. As part of this study, I had the opportunity to visit people with dementia living at home and talk with those assisting them. I became interested in the caregiver’s experience and how it affected not only their health but the experience of those they cared for. It became clear that not all caregiver experiences were negative and many found great comfort and meaning from their caregiving role. I worked with others to better understand these positive effects of caring and how they might influence caregiver decisions. I was also part of a team that studied pathways to diagnosis for families from different cultural backgrounds across Canada.
2. What is the most rewarding part of your work in this field as a scientist?
For me personally learning from individuals with dementia and their families and being able to share my knowledge with others is the most rewarding aspect of my work. I enjoy translating research findings into accessible language to help clinicians, policy-makers and other researchers better understand the dementia experience.
3. How has dementia management evolved in your years of working as a researcher?
Dementia management has evolved dramatically since I started practising. Whereas it was initially difficult to find dementia specific services, they now exist everywhere in Ontario. They are more likely to put the individual with dementia at the centre of care planning with programs for those with special needs (such as early-onset dementia) and focus on personhood and dignity. Support groups and advocacy groups for individuals with dementia are relatively new. Holistic approaches that focus not only on anti-dementia medications but diet, exercise, appropriate activities are more readily available. Programs also provide assistance for longer periods of time with earlier diagnosis and increased attention to needs at the end of life.
4. Dementia is an illness that not only impacts the individual, but it also impacts family members. From your experience, what advice would you give to our readers who have a loved one with dementia?
Family members play a vital role in supporting individuals with dementia. It can be a rewarding and exhausting role. In dementia care families have to simultaneously optimize the current situation and plan for a future when the disease will progress and the person with dementia needs will change. I would urge family members to be mindful of three major areas they should address. Firstly, they need to understand what dementia as an illness means, how it affects their family member and how it is likely to progress. Education and knowledge are important if one is to understand why a relative is behaving in certain ways and how to best support them. Secondly, family members need to address their own psychological and physical needs – caregiving can be stressful and caregivers need to take time for themselves and learn how to cope with these demands. This may mean learning new techniques such as Mindfulness, accessing individual or group counselling and paying attention to their physical health, diet and exercise. This leads to the last part of the triad which is asking for help and ensuring that caregivers have adequate social support. Caregivers need to build a support team of professionals, family and friends and learn how to effectively ask them for help.
Read more about Professor Cohen here:
