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Informal Caregivers of Persons With Dementia Inquiry—Debate Continued

On the Order:

Resuming debate on the inquiry of the Honourable Senator Andreychuk calling the attention of the

Senate to the challenges confronting a large and growing number of Canadians who provide care to

relatives and friends living with dementia.

 

Hon. A. Raynell Andreychuk: Honourable senators, I rise to call your attention to the daily

challenges confronted by a growing number of Canadians who provide informal care to those with

dementia.

 

An estimated 240,000 Canadians act as informal caregivers to a spouse, parent, friend or neighbour

with dementia. This is a lifechanging responsibility. It often comes about suddenly and can last for

years. Many of us already know someone in this role.

 

An aging population makes Canadians likelier than ever to fulfill the caregiver role at some point in

their lives. The contributions of informal caregivers are critical to the quality of life of people with

dementia, and will become increasingly valuable to the well-being of society over all.

 

Most people today are familiar with Alzheimer’s disease. Alzheimer’s accounts for 62 per cent of all

dementias, of which there are about 100 in total. Dementias are generally progressive, terminal

illnesses in which brain cells die on a large scale. Symptoms vary, but most follow several broad

stages.

 

Early-stage symptoms are akin to the normal consequences of aging. They can include difficulties

remembering names, managing money, planning and organizing, and keeping track of medications.

A person with middle-stage dementia may have trouble expressing thoughts, constructing sentences

and performing routine tasks. This can cause frustration, anger or unexpected behaviours.

 

In more advanced stages, people with dementia become entirely dependent on others. They need

help with personal care, bathing, dressing, eating, swallowing and walking. Eventually they lose the

ability to communicate with words and become vulnerable to infections.

 

Dementia is the fourth most common cause of death in Canada, yet there is no effective cure or

treatment. The World Health Organization estimates that about 35 million people worldwide have

some form of dementia. By 2050, this number will treble to 135 million people.

 

The Alzheimer Society of Canada says 740,000 Canadians have dementia. This number is set to

almost double by 2031 to 1.4 million Canadians.

 

The costs of dementia care will follow a similar path. In 2010, the global cost of dementia stood at

around $604 billion, or 1 per cent of global GDP. The direct and indirect costs of dementia care in

Canada are estimated to be $33 billion a year. The Alzheimer Society of Canada projects these

costs will reach nearly $300 billion per year by 2040; that is more than present total spending on

health care in Canada.

 

In its 2013 global risks report, the World Economic Forum listed aging and dementia in particular as

‘‘an emerging gamechanger.’’

 

The United States Advisory Council on Alzheimer’s Research, Care and Services has described it

as ‘‘an intergenerational challenge affecting all family members and creating for future generations

a fiscal burden of potentially devastating impact.’’

 

Alzheimer’s Disease International calls dementia ‘‘one of the most significant social and health

crises of the 21st century.’’The significance of the dementia challenge has been identified. Steps are

now being taken to help manage it.

 

Last December, for example, British Prime Minister David Cameron hosted a special G8 summit on

dementia in London. Health ministers pledged to work to identify a cure or diseasemodifying therapy

for dementia by 2025. Canada agreed to do its part by investing in research into dementia and other

neurological conditions.

 

On May 1, the government announced support for five research projects in the area of autism and

Alzheimer’s prevention. This and other initiatives suggest Canada is taking its commitment seriously.

 

The dementia challenge calls upon policy-makers, community leaders, civil society researchers and

private enterprise to develop a strong and coordinated response, utilizing all available resources.

 

One such resource is the one I want to speak to today, and it is the contribution already being

provided by unpaid, informal, family caregivers. Although relatively little is known about these

caregivers, it is possible to draw some broad outlines.

 

The Canadian Medical Association estimates that 73 per cent of Canadians providing informal care

to persons with dementia are between the ages of 45 and 64. Over a quarter of those providing

informal dementia care are senior citizens themselves. Many are working a job or running a

business, often in their prime pensionable years. Many still have children at home. A majority of

informal caregivers are women, but a growing number are male.

 

The services provided by informal caregivers of people with dementia tend to vary over time. Often

they include helping with housekeeping, cooking and transportation; providing companionship and

reminders to take medications; coordinating primary care and community services; helping with the

daily tasks of living and personal hygiene; managing estates and finances; and assuming

responsibility for making difficult life choices on behalf of the person with dementia.

 

The Alzheimer Society estimates that in 2011, informal caregivers spent more than 444 million

unpaid hours caring for someone with cognitive impairment, including dementia.

 

This represents $11 billion in lost income and over 227,760 equivalent employees in the workforce.

The total value of the services provided by informal caregivers is estimated at some $5 billion

annually. Informal caregivers often struggle to provide these valuable contributions. Typically, these

are people living busy, productive lives. Many Canadians have factored aging into their own life

planning. But the onset of dementia in a relative or friend often comes as an untimely surprise. This

almost always implies a measure of personal sacrifice, including emotional, financial and physical.

Amongst all informal caregivers, those caring for people with dementia are most likely to report

negative health impacts stemming from their caregiving role. Typically this is in the form of anxiety,

sleep loss, fatigue and irritability.

 

In 1994, the Canadian Study on Health and Aging found depression twice as common among

dementia caregivers as among caregivers of people with other diseases. Caregivers are also more

likely to use vacation or sick days, to reduce their working hours or to quit a job altogether.

Unsurprisingly, informal caregivers of people with dementia are often referred to as the hidden

patients or collateral casualties of the long-term care system. The World Health Organization said in

its 2012 report, Dementia: a public health priority:

        Dementia is overwhelming not only for the people who have it, but also for their caregivers

        and families.

 

I would like to share some lessons learned from my personal experience. First, you miss the signs.

Not knowing about dementia, you excuse unusual behaviour as signs of aging, even as it becomes

more erratic and draining.

 

Second, you want help with critical decisions but cannot find it. Your family turns to you to make the

final decisions. If you do your homework, you get loaded with information, but much of it is varied,

contradictory and difficult. Frequently, the final answer to your questions is, ‘‘It’s your decision.’’ Or

you might be told, as I was, ‘‘Put her in a home; that way, you don’t have to worry,’’ or ‘‘If you

really cared, you’d quit your job and look after her.’’ Or you might be asked, ‘‘What would your

mother want?’’ The  answer is, ‘‘I don’t know. We never discussed it; we never expected it.’’

 

Third, the hardest decision is the day you sign papers committing your loved one, mother in my case,

to a secure but locked institution. There I was, a human rights advocate, taking freedom away from

a parent.

 

Fourth is that services for persons with dementia assume the family caregiver is geographically

proximate. In fact, a growing number of families are spread out over long distances. Care

coordinators may not be able to swing by after work. Service providers are often not set up to

handle such situations.

 

Fifth, the consequences start sinking in. First you relate to the symptoms. Am I next? Is it genetic?

Second, you have lost your mother, but she is still there. So the grieving starts for a mother as

known, and the new relationship begins.

 

My experience is not unique. By interacting with other informal caregivers and the groups

committed to supporting them, I have come to understand that my frustrations are in fact quite

common. Part of the issue is a lack of awareness and preparedness. A lack of family physician

knowledge about dementia results in lagging diagnosis. Some two thirds of those living with dementia

are undiagnosed and untreated. By the time dementia is diagnosed, it is often due to a crisis. It is

often too late for families to plan home care or transitions into long-term care and to put aside the

necessary resources.

 

Another issue is the lack of service coordination. One of the most comprehensive literature reviews

on the challenges of caregivers of persons with dementia was conducted by the Murray Alzheimer

Research and Education Program at the University of Waterloo. It shows that as dementia

progresses, the level of support and service requirements change significantly. Most citizens do not

know about the availability of peer support groups, help lines, caregiver tax credits, home care,

respite care, and nursing homes. What is more, peer reviewed research in the journal Canadian

Family Physician shows that family physicians themselves rarely know what community services

are available and do not feel it is their job to look into this issue. As a result, informal caregivers can

struggle to obtain referrals. They are frequently left making decisions based on an incomplete

understanding of the options.

 

Finally, literature shows that informal caregivers are rarely viewed as clients of the health care

system. Instead of being involved as assets in the care of persons with dementia, informal caregivers

often report being treated as added burdens. This impedes their ability to provide quality care and to

feel satisfaction in the caregiving role.

 

The Mental Health Commission of Canada summarizes caregivers’ needs as follows:

        Family caregivers need ongoing access to information, guidance and support to fulfill their

        caregiving responsibilities effectively and to minimize the risk to their own well-being.

 

In proposing a Canadian caregiver strategy, the Canadian Caregiver Coalition articulates the

challenge in these terms:

        The coordination of federal, provincial and municipal initiatives is critical to an effective

        caregiver strategy.

        However, government alone cannot achieve a vision of ‘‘a Canada that recognizes, respects

        and supports the integral role of family caregivers in society.’’

        All elements of society, including the public and private sectors and individual Canadians, must

        work together to achieve the vision.

 

The Canadian Caregiver Coalition identifies five essential elements of its proposed caregiver

strategy:

        Safeguarding the health and wellbeing of family caregivers and increasing the flexibility and

        availability of respite care

        Minimizing excessive financial burden placed on family caregivers

        Enabling access to user friendly information and education

        Creating flexible workplace environments that respect caregiving obligations

        Investing in research on family caregiving as a foundation for evidence-informed decision

        making.

 

This is now sadly lacking.

 

The communiqué from the G8 summit on dementia in London last December reflected similar

insight. It called for ‘‘greater social responsibility and innovation to improve the quality of life for

carers and improve care while reducing costs and financial burden.’’ Toward this end, it advocated

training for caregivers, means to reconcile caregiving and career, support for caregivers in crisis,

affordable care options, civic engagement, the development of social networks, better use and

evaluation of evidence, and more.

 

The Hon. the Speaker pro tempore: Do you need five more minutes? Is it agreed, honourable

senators?

Hon. Senators: Agreed.

Senator Andreychuk:

 

As the dementia challenge gains unprecedented focus, bringing agendas together both internationally

and in Canada, we have an unusual opportunity to develop a uniquely Canadian response. The

success of this response will require us to reorient the long-term care system. We need to move

towards a more integrated model, one that recognizes informal caregivers as partners in care and

targets of social and health care services in their own right. Many such services and initiatives are

already under way. They are driven by dedicated organizations in the public and private sectors, in

provinces and communities across the country. But there is an opportunity and a need to leverage

these services for maximum effect.

 

I am fortunate that my mother is in an exceptional facility. I must say that so many others struggle

with getting that exceptional facility.

When visiting her, I often run into a fellow daughter-caregiver, Glenda Cole. In a recent article,

Glenda shared her thoughts on what it means to be a caregiver:

        I always say to new families that come in, ‘‘You may not believe me today because this is

        probably the worst day of your life, but it will be OK.’’

She goes on to say:

        You would never choose for a parent to have dementia, but if you have to go through this

        journey, it’s important to find good care.

        I probably see ten beautiful moments a day here. It kind of rips your heart out, though. If I

        focused on the tragedy I’d cry full-time . . . you have to find a way to cope, and the way to

        cope is acceptance.

She’s a very special woman.

An Hon. Senator: So are you.

Hon. Senators: Hear, hear.

Senator Andreychuk:

These are the sorts of sentiments that must be reflected in the way we work with informal

caregivers in tackling the dementia challenge.

You shouldn’t have done that; it choked me up now.

A proper response to these needs can yield impacts well beyond informal caregivers and those with

dementia.

 

The Mental Health Commission of Canada has asserted that:

        Well-supported family caregivers are likely to provide better care for relatives, generate

        savings in the system and enhance the benefits of caregiving.

 

With some improvements, I am convinced that informal caregiver contributions can become a more

valued and sustainable component of our response to an aging society and the dementia challenge.

 

I hope that senators here will engage in this inquiry with their own experiences and ideas. And I

must say that it is a way to thank all of you for putting up with me.

 

Hon. Senators: Hear, hear!