Living with dementia: understanding the condition and advocating for supports

Almost one million Canadians are projected to be living with dementia by 2030. In Canada, 50 per cent of people living with dementia are cared for by a family member. This means our system needs to adapt to support quality of life for not only the individuals with dementia but their caregivers as well. In spring 2023, RTOERO welcomed Geriatric Psychiatrist Dr. Sarah Coleman as part of the Vibrant Voices Advocacy webinar series to understand more about dementia and how RTOERO members can advocate for better supports for individuals with dementia and those caring for them.

We’ve included some highlights from Dr. Coleman’s talk below. The entire recording is available for RTOERO members on the RTOERO Learning platform.

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What is dementia?

Dementia, also called major neurocognitive disorder, is an umbrella term for different types of dementia. Alzheimer’s is one type of dementia that is most common and is characterized by short-term memory loss first. In this clip, Dr. Sarah Coleman explains some of the different forms of dementia.

When someone has dementia, they experience substantial cognitive decline that interferes with function or independence in at least one of the following areas:

• Complex attention – the ability to pay attention to many things at once and sustain it
• Executive ability – planning and organizing, inhibiting socially inappropriate actions
• Learning and memory
• Language
• Perceptual-motor-visual perception – the way you perceive things in the world
• Praxis – the ability to do familiar tasks properly, like brushing teeth

Understanding behavioural and psychological symptoms of dementia

There are a range of behaviours that are common when someone has dementia. They can include becoming easily confused or agitated, making unusual statements or socially inappropriate comments, misplacing objects, or taking others’ belongings.

Dr. Coleman explained that viewing behaviours as a person’s best attempt to respond to a situation and communicate their needs can be helpful. Those caring for someone with dementia need to work to understand the needs rather than trying to control behaviours.

Dr. Coleman may be involved with this kind of assessment as part of a collaborative care approach. Collaborative care means various practitioners and specialists working together to support an individual. Here Dr. Coleman speaks about collaborative care and her role.

Ideas for improving care for people living with dementia

When thinking about dementia care or eldercare in general, the focus shouldn’t be on simply creating more long-term care beds to house people. There should be a range of programs and supports that cater to the individual needs of people and their families—and a focus on dignity. Well-thought-out environments can help to reduce troubling psychological and behavioural symptoms of dementia. Dr. Coleman offered some ideas for consideration and exploration.

Bolster current homecare supports

• Often, homecare roles such as PSWs are held by racialized women, and the pay is very low – pay should be increased to make this career option more viable and to support the dignity of workers.
• Increase the number of hours available to older adults who are receiving homecare support. This can improve individual outcomes while supporting their friend or family caregivers.

Investigate cash-for-care

• Cash-for-care is providing money directly to families to allow them to purchase the needed care. 

Invest in community paramedicine programs

• Paramedicine programs are happening in communities across Canada. Paramedics provide support to individuals in their homes. These programs can prevent hospitalization.

Provide more day programs

• Day programs are programs that people with cognitive impairment or dementia can go to during the day. These programs provide a break for friends and family caregivers. The well-being of caregivers impacts the well-being of the person with dementia. Respite is critical.

Design dementia villages

• Dementia villages are designed to feel more like a community, with homes, staff wearing regular clothing, activities and beautiful settings. They’ve been shown to reduce the behavioural symptoms of dementia.

Watch Dr. Coleman explain these options.

Resources

Dr. Coleman offered suggestions for further learning and support:

• Being Mortal by Atul Gawande
• Ageism Unmasked by Tracey Gendron
• The 36-Hour Day by Nancy L. Mace and Peter V. Rabins
•  Alzheimer Society

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• Staff of public and Catholic schools and school boards
• Staff from First Nations schools and education organizations
• Staff from daycare and early years centres
• Staff from private schools
• Staff and faculty of colleges and universities, including contract staff
• Staff from education associations
• Trustees
• Crossing guards
• School transportation staff, including bus drivers

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