Caring for People with Dementia
The journey through dementia can be long and unpredictable
for people with the disease and those who care for them.
However, the path can be easier to navigate for families who
recognize the condition early, prepare to manage its
challenges, and plan for some practical aspects of life along
with the person with dementia.
“When a person has been diagnosed with dementia, it’s a good idea for them to eventually sit down with their
family and consider some critical decisions for the future,” says Dr. Michael Wilkins‐Ho, a geriatric psychiatrist
who is the Head of the Division of Geriatric Psychiatry at the University of British Columbia.
People with dementia eventually require more assistance with activities of daily living, such as managing
finances, making healthcare decisions, and arranging living accommodations. For many, these decisions have a
profound effect on their sense of autonomy. When to give up driving can be a particularly difficult decision,
since operating one’s own vehicle is so closely tied to a sense of independence.
Martin, a stalwart family man with a spotless driving record all his life, promised his family that, when the time
came, he would willingly give up his driver’s license. His family, with every reason to believe him, waited
patiently for him to make this decision independently. Unfortunately, when he was diagnosed with dementia, he
postponed making the decision and, as his mental condition progressed, he became less clear on when to stop
driving. Ultimately his concerned family had to persuade him to renounce his license. “This is the type of
discussion we, as clinicians, should initiate with people with dementia, and encourage people to make decisions
early on in their diagnosis,” says Dr. Wilkins‐Ho.
Assigning a legal Representative delegates the responsibility for personal care decisions to a family member or
another care giver. This arrangement can be set to take effect when a person’s cognitive abilities decline to the
point where it is necessary. In the province of British Columbia, the Representation Agreement is different from
Power of Attorney; both concepts should be discussed.
“It’s very important for people to discuss what is important to them, including updating their wills, and make
advance directives for end of life care,” says Dr. Wilkins‐Ho. Advance directives include answers to questions
concerning resuscitation and other “heroic efforts” to keep the person alive if their heart stops. Some people
call this “allowing natural death”; others refer to “dying with dignity”. Many seniors choose this option, even if
they do not have dementia. “The only way to make this choice effectively is to discuss the options before
dementia progresses to the point where concepts are more difficult to understand,” says Dr. Wilkins‐Ho. While a
Representative has the power to make general healthcare decisions, a written advance directive saves the
Representative the stress of having to make emotionally difficult choices for a senior at the end of life.
Financial planning includes consideration of any future special care that may be required, particularly if the
person with dementia has a modest income. Since Canada does not have a national Seniors Health Strategy,
caregivers must learn how to navigate the system effectively to discover the available options and begin the
process of applying for them.
“When discussing the anticipated needs of the person with dementia, caregivers and clinicians need to consider
that person’s input and collaboration; otherwise we diminish them as people,” says Dr. Wilkins‐Ho. “A sense of
personhood is critical to maintaining an interest in life and a sense of connection.” Caregivers themselves are at
high risk for clinical depression. “Many people who care for people with dementia are partners who are seniors
themselves,” says Dr. Wilkins‐Ho. “They often need support to manage the stress that comes from providing
Dr. Wilkins‐Ho emphasizes the importance of maintaining a sense of community. “Seniors, particularly those
with dementia, can feel isolated, which contributes to loneliness and helplessness,” he says, “activities and day
programs are available through seniors services and community centres.” Dr. Wilkins‐Ho recommends the
Alzheimer’s Society (http://www.alzheimer.ca/en, and http://www.alzheimerbc.org/ ) and the British Columbia
government’s Dementia Action Plan, Priorities and Actions for Health System and Service Redesign, at
http://www.health.gov.bc.ca/library/publications/year/2012/dementia‐action‐plan.pdf for more information.
The process of caring for seniors with dementia involves ongoing decision‐making, which may require
addressing what is important to us as a society. “We need to keep talking about what it means to age with
dignity,” says Dr. Wilkins‐Ho, “we can’t wait for the health care system to provide answers.”
Scheduled for publication in Sing Tao Daily News, January 2015
Dr. M. Wilkins -Ho in Sing Tao Daily News – Care giving for a person with Dementia
Caring for People with Dementia