Make A Difference

Cynthia Banks spent eight months searching for participants for the documentary The Caregivers’ Club. During that time, she interviewed many at-home dementia caregivers who were in a state of crisis. Many were exhausted and overwhelmed with the number of responsibilities and the inability to have any time for their own care.  The process of making this film has inspired her to spearhead The Caregivers’ Club Family Relief Fund with the mandate of supporting caregivers in physically and financially challenging situations so they may hire private help at their convenience.

We want to “care for the carers” and allow dementia caregivers to do something for themselves – whether it’s to catch up on sleep, go to the gym, take a walk or sing in a church choir. These hours of respite can make or break a caregivers’ journey.

 Director Cynthia Banks with her mother Phyllis Banks.

Director Cynthia Banks with her mother Phyllis Banks.

Individuals with dementia require a lot of care, and it's usually provided by the family.

 
 Angie Cramarossa with her mother Rafaella.

Angie Cramarossa with her mother Rafaella.

Caregiving is challenging and research has shown that it is much more difficult to do than caring for someone with a physical disability. You never know what the loved one is thinking or going to do next. Caregivers experience multiple demands.  It requires time, energy, and often, physical exertion. As the disease progresses, family members often provide care for many years and are under high levels of stress and chronic fatigue because of the long hours of care without relief.

In the home setting, the multiple tasks of the caregiver evolve as the disease does and typically, the level of support increases.

The caregivers’ role will vary according to the progression of the disease and is dependent on many factors but includes support for daily living activities and expands to include personal care and eventually almost constant supervision.

Source: Dementia: A Public Health Priority, WHO 2012

Above source: Alzheimer’s Disease INTL: World Alzheimer report 2015

 

 
 

Costs for those with dementia are estimated to be five times greater than for those who are dementia-free.

Source: Alzheimer Society of Canada. Prevalence and Monetary Costs of Dementia in Canada. Toronto. Alzheimer Society of Canada, 2016.

 

A national dementia strategy is the single most powerful tool to transform dementia care.

 
 Susan & Sheldon Abramovitch at the 2017 Walk for Memories in Toronto, Canada.

Susan & Sheldon Abramovitch at the 2017 Walk for Memories in Toronto, Canada.

As Canada’s population ages, the number of caregivers who are involved in dementia care is on the rise.  The latest statistics from the Alzheimer Society show that there are 25,000 new cases of dementia every year and by 2031, the number of cases will increase 66% from today.  It is already the seventh leading cause of death.  Canada’s health-care system is ill-equipped to deal with the staggering costs so more and more of the burden will fall into the hands of the family.

On June 22, 2017, Canada became the 30th country to launch a national dementia strategy, Bill C-233, An Act respecting a national strategy for Alzheimer’s disease and other dementias, which means the Government of Canada will address the overwhelming scale, impact and cost of dementia. 

A national dementia strategy is the single most powerful tool to transform dementia care but it must not only improve the quality of life for those who have dementia, it must be vigilant in recognizing and supporting the vital needs of informal family caregivers.  

These caregivers are the foundation of our healthcare system and are most often the forgotten ones, with their importance trailing behind resources allocated for research, prevention, training, and formal healthcare supports.

Source: Dementia: A Public Health Priority, WHO

Above source: Alzheimer Society of Canada

Above source: Alzheimer Society of Canada. Prevalence and Monetary Costs of Dementia in Canada. Toronto. Alzheimer Society of Canada

 

 
 

Informal caregivers spent 19.2 million hours per year taking care of their loved ones in 2011. This number is expected to double by 2031.

Source: Alzheimer’s Society of Canada

 

We need to give equal priority to the needs of the primary caregiver.

 
 Barbara Schechter with her mother Donna.

Barbara Schechter with her mother Donna.

In a call to action, Dementia: A Public Health Priority, The WHO and Alzheimer’s Disease International, writes about the consequences of dementia caregiving, “Those involved in providing services for people with dementia often speak of a second patient in the making (the family caregiver) when a person is diagnosed with dementia. This is an important reminder of the need to give equal priority to the needs of the primary caregiver who is a crucial resource in the long-term care arrangements for the person with dementia. Caring for a person with dementia can have a negative effect on the caregiver’s psychological and physical health, life expectancy, quality of life and economic security. The disease can have profound and often adverse impacts on family dynamics and role functioning.

It is often thought that large intergenerational families in traditional societies cope well with dementia and are relatively immune from caregiver strain. However, the pilot studies of the 10/66 Dementia Research Group in 25 sites in LMIC in Africa, Latin America, China and India revealed levels of caregiver strain as high as those typically seen in European and North American studies.  The primary stressors identified in western research are sometimes compounded by a profound lack of awareness of the nature of the condition, and stigma and blame consequently attaching to the caregiver.”

Above source: Dementia: A public health priority –WHO/ADI 2012

Above source: Alzheimer’s Disease INTL: World Alzheimer report 2015. The Global Impact of Dementia An analysis of prevalence, incidence, cost and trends

 

 
 

In 2016, we spent $10.5 billion in out-of-pocket and health-care system costs on dementia. This number will increase to $16.6 billion by 2031.

Source: Alzheimer Society of Canada

 
 

Make a Difference

 
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