Strong relationships help ease dementia care
When a loved one is diagnosed, lay the groundwork for future care
Over the next15 years, the number of Canadians living with dementia will almost double, meaning more Canadian families will become caregivers. If you have a loved one who has been diagnosed with mild cognitive impairment or early dementia, there’s much you can do now to lay the groundwork for smoother future care.
Perhaps the most important thing is to establish the best relationship possible with your loved one and work on communication issues, if this is a problem.
Being a caregiver to someone, whether they’re a partner, parent or family member, reflects your relationship with them.
Many people take on the role for different reasons, but those who hold affection and respect for the person being cared for experience less difficulty when the lifting becomes heavy.
This doesn’t mean that having the perfect relationship should be a prerequisite for being a caregiver, but when it came to my late parents, my positive relationship with them, as well as my sister’s, helped us navigate the next steps.
People with dementia usually experience a progressive decline in their ability to remember, understand, communicate and complete day-to-day tasks. At the same time, the caregiver’s role and responsibility gradually becomes more intense, starting with reminders, then occasional visits, helping with chores and taking on more additional duties.
For caregivers, this new role is like constantly being in the middle of a tug of war — an all-encompassing, juggling act. Developing resilience helps caregivers face the challenges ahead. One way to build that extra flexibility is by developing ways to think positively about your responsibility.
It’s critical to know the pitfalls. Being overprotective is a common source of conflict. Though dementia hampers a person’s capacities, their independence still matters a great deal. Caregivers can overstep boundaries when they take over ordering at a restaurant, criticize clothing choices and arrange activities the person being cared for doesn’t enjoy. Life is full of risks and just because somebody has a diagnosis of mild cognitive impairment, dementia or Alzheimer’s disease, doesn’t mean they have completely lost all their capabilities.
Doctors can provide a person’s prognosis and address common symptoms and issues to watch out for, but ultimately the illness is unpredictable. If you are a caregiver, it’s important to strike a balance between managing risks, such as avoiding falls, wandering and kitchen hazards while cooking, and helping your loved one live a full and independent life. When independence is no longer possible, that’s when big decisions need to be made.
It’s not uncommon for a person with dementia to initially reject living at home with personal assistance or moving to a care facility. Easing a loved one into the situation is the best way to handle their concerns. If you hope to set up live-in care assistance, start with a part-time support worker to give your loved one a chance to warm up to the idea.
With my late father, his move into a retirement home was set initially as a three-month trial. When the trial period was up, he chose to stay because he came to realize that he benefitted from the care and enjoyed the environment, and the social activities available.
There is a common belief that once the person being cared for is moved to a care facility, a caregiver’s role is over. That is far from true. New challenges will arise and caregivers will be the first ones called if something happens. Caregivers can be prepared by educating themselves through reputable sources of dementia and caregiving information, such as the Baycrest, Alzheimer Society and Mayo Clinic websites. Trusting the people and the programs involved in a loved ones’ care will ease the transition.
For many caregivers, burnout is an all too common problem, leading to resentment and less resilience. If you are a caregiver, avoid burnout by taking these steps:
Maintain other aspects of your life — whether it’s seeing friends, keeping up with hobbies or raising your family. These all play a role in caregiver wellbeing.
Take advantage of adult day programs for people with dementia offered at seniors’ centres across Toronto. This not only offers respite, but social opportunities for individuals with dementia as well.
Learn about caregiver resources. Caregivers can become isolated and overwhelmed with the situation. There are support and education groups, counselling and navigation and access support, to help you cope. Baycrest’s Koschitzky Centre for Innovations in Family Caregiving offers counselling and referral services to help caregivers figure out next steps.
Learn more about the challenges experienced by caregivers at a free panel discussion and public screening of the documentary, The Caregivers’ Club, on Jan. 31, 1:30 p.m. to 3 p.m. at the Jacob Family Theatre at the Posluns Auditorium at Baycrest. RSVP at baycrestcaregiversclubscreening.eventbrite.ca. Dr. Michael Gordon is a professor of medicine at the University of Toronto and a geriatric specialist at Baycrest Health Sciences. Doctors’ Notes is a weekly column by members of the U of T Faculty of Medicine. Email doctorsnotes@thestar.ca.