CAREGIVERS SUPPORTING LOVED ONES NEED HELP

The number of dementia cases in Alberta is expected to double, write Shawna C. Rambadhan and Donna M. Wilson.

Each year, the first Tuesday in April is National Caregivers Day. This day of recognition is designed to raise awareness among all Canadians about the exceptional contribution of informal caregivers.

Informal caregivers, sometimes called family caregivers, are people who take on an unpaid caring role to support another person who needs help. Dementia caregivers are particularly noteworthy as they care for people with a long-term condition that often becomes severely debilitating, both physically and cognitively. Research studies show that those individuals providing informal care to people with dementia are likely to spend 75 per cent more time caregiving that those providing informal care to individuals with other chronic conditions.

Dementia is what a group of neurological disorders are called, all of which have progressive symptoms. The most common type of dementia is Alzheimer’s disease. Dementia often starts with a decline in memory and it leads to a reduced ability to perform activities of daily living. Dementia caregivers are essential, as 85 per cent of individuals who are challenged by dementia live in the community.

An estimated 40,000 Albertans live with dementia now. The number of dementia cases in Alberta is expected to double as the large baby boom generation advances into older age and many of their parents live on. By 2038, it is estimated that one in 10 Albertans over the age of 65, and nearly half over the age 90, will be living with dementia.

Generally, the costs for people with dementia are estimated to be five-and-a-half times greater than those people who do not have the condition. In Alberta, the direct health-care costs for dementia exceed $1.2 billion. Without informal caregivers, this cost would be substantially more of an economic burden to the health-care system. In 2011, informal caregivers for dementia provided 19.2 million unpaid hours of care. This number is projected to double by 2031.

One of the greatest gaps now is that informal caregivers and individuals living with dementia often feel disengaged from the community. Being an informal caregiver for an individual living with dementia is very difficult — physically, emotionally, socially and financially. Without adequate community supports, informal caregivers are very challenged to manage the progressive symptoms and ongoing care needs of people diagnosed with dementia.

Two consequences occur when informal caregivers are not adequately supported in the community: the person with dementia moves to a long-term care facility, and the caregiver’s health is diminished.

Research shows that when people remain connected with their community, this connection increases their mental and physical health, reduces social isolation, and prevents caregiver burnout.

The Student Advocates for Public Health, a group of graduate students in the School of Public Health at the University of Alberta, are asking for enhanced community supports for individuals living with dementia and their informal caregivers. A press conference at the University of Alberta on Tuesday will call upon our governments to now help our informal caregivers.

We are calling upon municipal and provincial government across Alberta for these actions:

Recognize the rights of caregivers

■ and people living with dementia to remain active and valuable members of their communities, protected under a provincial Caregivers Recognition Act;

By 2020, every municipality in

■ Alberta will implement a fully funded dementia-friendly transportation service that is accessible to all;

By 2020, every municipality

■ in Alberta will provide complete funding for dementia caregiver support groups available in their communities.

National Caregivers Day is the day designed to raise awareness of informal caregivers. It is a small step forward in honouring our caregivers, but we must advance this agenda. Shawna C. Rambadhan is a RN who has worked in emergency departments in Canada and Australia. She is currently enrolled in the Master of Nursing (clinical-nurse practitioner stream) at the University of Alberta. She is a student advocate for public health. Dr. Donna M. Wilson (RN, PhD) — is a RN and tenured professor at the Faculty of Nursing at the University of Alberta. Her research focuses on health services and policy, in relation to aging and end-of-life care.