Alzheimer’s exacts heavy toll from caregivers
By: Peggy Curran, THE GAZETTE
Published: January 3, 2007, Montreal Gazette
In 1979, fresh out of her undergraduate years and newly married, Linda Furlini found herself saddled with responsibility for her parent's physical well-being. Without warning or choice, she had become caregiver, minder and parent.
“Both my parents began showing signs of dementia by the time they were 60,” Furlini recalls. Her mother initially exhibited telltale symptoms which Furlini and her sister recognized but physicians failed to diagnose for five years.
“I had a terrible time getting help. It was horrific, actually,” she said.
Her 19 years of commitment to her late parents continue to shape Furlini’s destiny, her world views and career as a scientist. She remains an advocate for a health-care system better equipped to help patients and their families.
Past-president of the Quebec Federation of Alzheimer Societies, Furlini returned to school six years ago. She has since earned a master’s degree and doctorate at McGill University. She focused on educational psychology and the practical and emotional support families need – but rarely get – to cope with a loved on in declining mental health.
In November, she was awarded a $20,000 science scholarship by L’Oreal-UNESCO to permit her to continue her studies on the effect of Alzheimer’s on patients and their caregivers. As a post-doctoral fellow, she has been recruited by the Canadian Longitudinal Study of Aging, a federally funded research project that aims to follow 50.000 people age 40 to 80 over a 20-year period. Furlini joins a team of more than 200 researchers at 50 institutions who will try to get a better handle on all aspects of the aging process. They’ll look at biological, behaviour and societal factors that might explain why some people age better than others. They will also try to improve services for the aged, ensuring seniors who are ill or frail receive good, humane care.
When a patient has dementia, health-care professional cannot afford to ignore the needs of caregivers, who may be plagued by feelings of guilt and loss, or worn out by stress and physical exhaustion. “There’s a lot of blaming of the caregivers,” said Furlini , whose master’s thesis examined the experiences of three women who took charge of parents with Alzheimer’s disease. “Even among health care professionals, there is poor awareness of what it is like to live with the disease, the cumulative effect of enduring this situation on a 24-hour basis.”
Alzheimer’s isn’t the only disease where caregivers may find it difficult to cope. Parents of disabled children know what it is like to fight for programs, respite care and treatment. Yet, Furlini underlines an added psychological burden for caregivers dealing with a senile parent. “These are people they have known and loved all their lives who become forgetful and, at times, abusive. The relationship is changed.”
“Caring for people with dementia can have heavy physical and mental consequences. How do you help the patient if the caregiver is overwhelmed?”
For more information on the Canadian Longitudinal Study on Aging www.clsa-elcv.ca