When Alzheimer's Disease is Diagnosed
Imagine the outlook for your life changing in minutes. A diagnosis of Alzheimer’s disease can be that stunning. If your parent is diagnosed with Alzheimer’s, how can you help them as they strive to make the most of the years ahead?
An Alzheimer’s diagnosis may bring stages of grief and anxiety – when and how should your parent share the diagnosis with loved ones, friends, and colleagues?
Sharing the news is part of coping with the news. If Mom or Dad tries to hide their Alzheimer’s from family members, friends, or even coworkers (if they are still working), it could inevitably lead to tension and stress. They may already have a diagnosis, or at the very least, be suspicious of one.
Some of your parent’s friends may not know how to respond to the news. But if they are open with those friends about their diagnosis – and how they are trying to cope with it – it can help to reduce any confusion and apprehension. Some of their acquaintances may shy away; their true friends will not.
As the Alzheimer’s Association notes to those finding out they have the disease, “You are the only person who can change how you feel about your diagnosis.” Many people in the early phase of Alzheimer’s learn that they must be proactive – they must build a care team of family, friends, doctors, and caregivers for the present and future, and additionally, seek out support groups. Simply waiting for the world to help is never the route to take.
Your parent(s) will need to come up with a coping strategy. To stay engaged with the world, stay active as long as possible, and keep meeting the challenges of daily life, your parent will need a plan. It can be fine-tuned as needed.
The Alzheimer’s Association identifies three key steps of all such coping strategies: identify, prioritize, and strategize.
What tasks do Mom or Dad have the most trouble with? Can someone help them accomplish them, while your parent remains wholly or mostly in charge, or should those tasks be assigned to a loved one or caregiver? Can the process of the task be simplified with fewer steps, so that your parent can keep doing it? There may be multiple ways to solve most of these issues. Let Mom or Dad know that asking for help is not an admission of weakness.
As an example, if Dad fears losing track of Mom at a mall or sporting event, both of them can wear the same color of shirt, so Dad can easily look at the color of his shirt and locate Mom.
Alzheimer’s affects not only an individual, but an entire family. It is an adjustment, and some spouses, siblings, and children adjust more quickly than others. Let Mom or Dad know that they should forthrightly express the degree of understanding and help they need from you. You understand they want to enjoy a full, rich life for as long as they can, and you want to be a good – no, great – son or daughter and help them as much as you can.
Families must also address future caregiving and financial aspects of living with Alzheimer’s. Meeting with a financial professional and/or an eldercare provider can help an individual, couple, or family arrive at a ballpark estimate of extended care costs. Perhaps the place where your parent lives can be modified to permit “aging in place” for a very long time with the help of caregivers.
Where can families find help? The Alzheimer’s Association maintains a website, communityresourcefinder.org, where you can find local programs, resources, and service providers responding to the needs and wants of those with the disease.
Make sure to get a second (or third) opinion. Is it actually Alzheimer’s? Be sure. No diagnosis of Alzheimer’s is made cavalierly, but sometimes, less-common neurological disorders (such as Lewy body dementia, Pick’s disease, Creutzfeldt-Jakob disease, and frontotemporal dementia), which may initially present similarly to Alzheimer’s disease, might be overlooked. Under such circumstances, years may pass with both the patient and caregivers believing the patient has Alzheimer’s, when in fact, that is not the case. A plan of care may be established, seeking to adapt to or even delay the progression of Alzheimer’s, when another one might actually be more appropriate.
Invest in Mom or Dad’s joy. This is no time for your parent to retreat from life; this is a time for them to live fully, each and every day. While they may need to explore adaptations to activities they love, or find new ones altogether, they should continue to pursue their passions, as their minds and bodies permit. In time, they will simply live in the moment; resolve to share as many precious moments as you can with them, today and tomorrow.