Creating a family plan can empower dementia caretakers

Five years ago, I was unexpectedly thrown into the role of part-time caretaker when my mother was diagnosed with Alzheimer’s. It was a daily anguish that was very difficult to come to terms with and is, of course, still a struggle. Loving a parent with dementia has been an adjustment, to say the least, and among the many things I’ve learned along the way, one is very important and often overlooked. So much stress and confusion can be avoided when one has a family caregiving plan. Having a plan is a proactive way for Canadians to anticipate the needs of their loved ones with dementia and plan for the progression of the disease.

After my mother wandered in downtown Toronto and got lost (as 60% of Alzheimer’s sufferers eventually do), she ended up being found 20 kilometers away and needed to recover in the hospital for three days with pneumonia. I realized that planning for the possibility of events like this was an important part of her care—and our family’s.

The current climate

Medical advances over the past few decades mean that our lives are being extended longer than ever, yet treatments for the severe health consequences that sometimes accompany aging, like Alzheimer’s, haven’t kept up with this trend. Canada is facing a future of skyrocketing cases of dementia. Currently, 564,000 people in Canada are living with dementia, and this is expected to almost double by 2031. At present, 1.1 million people are affected directly, or indirectly by the disease. Yet, despite the booming numbers, many people who are affected by it don’t have a caretaking plan.

What is a family caretaking plan?

At its basic level, a caretaking plan is simply thinking ahead and forecasting the needs of a loved one with dementia and the effect the disease will have on the family. It involves ongoing conversations with family and loved ones, discussing things like expectations and roles, and making a strategy that people can rely on to guide them when faced with any difficult situations the disease might bring.

Why have a family care plan?

As humans, we are creatures of optimism, which means that many of us fail to anticipate any possible negative events in our lives. We Canadians know the issue of dementia is certainly in our nation’s future, yet many Canadians haven’t thought about or planned for the aging process—neither for themselves nor their loved ones. Families can use a family caretaking plan to help them look objectively at the situation they’re in.

It can help by:

• teaching you about the disease
• building a support system
• easing financial burdens
• anticipating and preparing for dementia-related- difficulties
• anticipating and preparing for a dementia-related decline
• reducing care-taker stress
• reduce the likelihood of experiencing a dementia-related crisis

It also ensures that our loved ones will get the best care going forward, because it plans for the various scenarios someone with dementia might face (wandering, falling, communication difficulties, financial strain, new living arrangement, etc.), and has strategies and techniques to deal with them.

Caretaker stress

Many caretakers experience significant sacrifices and emotional difficulty while caretaking. The toll caring takes can easily lead to neglecting one’s own needs. Having a strategy can ease our stress as caretakers and better prepare us to handle what’s coming. Having a realistic understanding of the demands of being a full- or part-time caretaker is a helpful way to manage expectations and reduce the likelihood of caretaker burnout.

Know the benefits of planning ahead

It’s not a crisis if you planned for it. This is one of the most important ideas I wrapped my head around while visiting the hospital for days after my mother had her wandering episode. When we operate from the experience of panic, fatigue, or crisis, we often make misguided decisions we later regret. Planning ahead helps us to make decisions ahead of time that come from a rational, level-headed thought process. While there are no hard and fast rules for creating a family care plan for a loved one with dementia, these are some general guidelines to consider.

YOUR FAMILY CARETAKING PLAN MIGHT INCLUDE: 

Opening up the conversation with family

Caretaking can be a tough subject to broach, especially with family members who aren’t very open about the subject matter, or who are having difficulty adjusting to aging as it is. Many people are scared to talk about things like long-term care facilities, but starting a dialogue is a crucial first step. These conversations are best had as ongoing check-ins, instead of one-time talk. Remember that everyone needs adjusting, and even those who are resistant to discussing care planning can eventually come around with time.

Having a wandering plan

Recently while at a dementia workshop, I overheard this: “There are two types of dementia patients. Those who have wandered, and those who will.” Wandering is a very common dementia behavior, and is a potentially dangerous one. If not found within 24 hours, 50% of those who wander are found dead or seriously injured. Being prepared through things like caretaking shifts, MedicAlert bracelets, and having information ready to give police in the case of an emergency are good ways to proactively approach the possibility.

Planning for stages of decline and increased care needs

Though there is still so much unknown about age-related dementia, we do know the general pattern of decline. It is a degenerative disease that tends to follow a similar pattern, and we can use this to predict the stages of our loved ones. There are various stages of decline, and understanding where your loved one falls on the spectrum requires attentiveness and ongoing assessment. As our loved one declines, we will have to make decisions about adjusting things like accommodation (the loved one moving in with family, family moving in with them, bringing in outside help for daily tasks, retirement homes, etc.), as well as how we communicate with them, and how we deal with their behavioral changes.

Financial planning

Dementia and its related costs can be expensive for family members, which is why financial planning is so important. This planning will include caretaking costs and also might include wrapping up our loved one’s own finances if they are no longer able to do so.

This will include things like

• appointing a substitute decision-makers for assets and property
• Estate planning
• Managing bills
• Managing senior’s financial affairs and investments
• Predicting how long the senior’s money will last

Keeping yourself balanced and building a support system

At first, when my mother’s foggy memory and unusual behavior were something our family tried to rationalize and make excuses for, it was harder to cope with. When we started to feel comfortable acknowledging it, and talking about it openly as a family, it felt like a huge relief. Suddenly I was able to share with friends and colleagues about my difficulties and I was able to build a supportive system of people who I could discuss it with, and rely. Building a support system was one of the most important steps I took in my journey as a caregiver.

We, caretakers, don’t have to go through the experience alone.

Alzheimer’s Society Canada is a wealth of information and offers workshops and support groups.

Though it’s a difficult subject to speak about, even to think about, planning our caretaking strategy is an important one to face head-on, because when we plan for it, it becomes much easier for ourselves and easier for our loved one with dementia.

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