Planning for a Future with Alzheimer's Disease
Tuesday, January 13, 2015
The most common form of dementia, Alzheimer’s Disease, is characterized by memory lapses, mood changes, behaviours that are out-of-character, and difficulties with concentration, problem-solving and language.
Alzheimer’s is a progressive disease with symptoms that are mild in the beginning, but which gradually worsen over time and start to interfere with daily life. Eventually, the Alzheimer’s patient will be unable to care for himself and will require assistance with all daily activities.
An Alzheimer’s diagnosis is devastating, not only for the person afflicted, but also for loved ones. There is no cure for Alzheimer’s, but there are benefits to an early diagnosis such as medications that can slow the disease’s progression, and the opportunity for the patient to take an active role in planning for the difficult days ahead.
Identify a support system
Working with your doctor, develop a plan that includes regularly scheduled appointments to evaluate symptoms and current treatment. Referral to a specialist may be required.
Decide on a substitute decision-maker. This person will be responsible for making healthcare decisions on your behalf when you are no longer able to do so. Talk openly and honestly about the level of care you want. By doing this, you will make those choices easier for your caregiver, plus you’ll have the comfort of knowing that your wishes will be honoured. It’s a good idea for your substitute decision-maker to attend all medical appointments with you from the beginning.
Reach out to the Alzheimer’s society in your area for resources and information on support groups and other opportunities to meet people who understand what you’re going through.
Talk to a mental health professional who can offer guidance to you and your loved ones.
Put your personal affairs in order
It is important for you to be a part of the decision-making about your financial and legal affairs while you are able to make critical decisions and sign legal papers.
Arrange for a power of attorney to legally authorize someone you trust to make decisions on your behalf when you are no longer able.
Gather your legal and financial documents together such as:
- Bank accounts
- Credit cards
- Insurance policies (life, auto, home, disability)
- Pension plans, Registered Retirement Savings Plans (RRSPs)
- Home/business/car ownership
Make sure you have policy numbers, agents’ names and phone numbers, bank account numbers, and other essential information available for your power of attorney to access your documents. Let your trusted advisor or a family member know where everything can be found when necessary.
If you have critical care insurance or long-term care insurance, inform your insurance company and review your policies with your agent and your substitute decision-maker so a claim can be made when the time is right.
Make your wishes clear
As soon as possible after being diagnosed, contact a lawyer to prepare the important documents that will make your wishes known to your caregiver and family members. These documents include:
- A Will that states how your property should be divided after your death
- A document that names your substitute decision-maker who can make decisions about financial and legal matters on your behalf when you are no longer able to
- A document that names a substitute decision-maker for future healthcare decisions
- A "Living Will" that describes your wishes for healthcare and end-of-life care. This will be a huge comfort to your family when they must make difficult decisions as the disease progresses
For now, you may be perfectly capable of taking care of yourself with perhaps some assistance from a family member. As the disease advances however, your need for help with things like housekeeping, shopping and transportation will become greater. It’s important to consider now where this help will come from when you need it most.
These may include:
At-home care – You can stay in the comfort of your own home with a part-time or live-in nurse or caregiver. You may need to consider things like installing stair railings, intercoms, door alert alarms and preparing an extra bedroom for the caregiver.
Assisted-living residences – These residences provide independent-living suites so residents can maintain independence but still have assistance close at hand if need be. There is usually a group dining area, planned activities for residents, physical therapy and rehabilitation rooms as well as an on-site medical team.
Long-term care facilities – These facilities provide round-the-clock care and medical treatment as required. They have services to address all nutritional, hygiene, recreational, and medical needs of the patient. Some have designated units for Alzheimer’s patients which are designed to meet specialized needs.
Hospice – In the worst cases, hospice care is available to keep the patient as pain-free and symptom-free as possible while offering spiritual and supportive counselling.
Alzheimer's Planning Checklist
The Alzheimer’s Society of Canada offers the following checklist that provides some of the key questions to ask when planning for the future.
- Who will be the substitute decision-maker for financial matters when you are unable to make those decisions for yourself?
- Do you have a Will?
- Who will be your primary caregiver?
- What role will other family members play?
- Where are you currently living?
- If you live on your own, are you safe?
- Should you start investigating other options such as assisted living or long-term care facilities?
- Who will be your substitute decision-maker for healthcare decisions?
- If your primary caregiver is unable to provide care on short notice (i.e., during a medical emergency), is there a plan in place?
- Are family and neighbours aware of the back-up plan?
If you (or a loved one) have been diagnosed with Alzheimer’s Disease, now is the time to take steps to prepare for the future.