Alzheimer’s is a family disease

No matter how you look at it, Alzheimer’s is a family disease. It doesn’t affect just one person. Although everyone gets the same diagnosis, no two people will experience Alzheimer’s the same way.

At this point there is no cure and there is no preventive vaccine for Alzheimer’s. It continues to mystify and baffle all the researchers, although more than a few have every confidence that an effective treatment – if not a cure – is on the horizon. 

In a bid to do something positive, families often scour the Internet in search of something more than the traditional pharmaceutical products (think Namenda, Aricept, Exelon, etc.). It’s easy to find numerous alternatives with tall tales of success – herbal supplements, stem cell therapies, apple juice, coconut oil. However, there is no scientific proof that any of these do more than drain family pocketbooks.

Things that do have impact cost very little. Social engagement, physical activity, healthy diet and mental stimulation all appear to have a significant impact. In general, these simple steps do make a difference.

One of the hardest things families will encounter is the shrinking of their circle of friends.  Alzheimer’s is hard to keep secret. Acquaintances may distance themselves when they hear about the diagnosis. Even family members may come around less frequently, perhaps avoiding conversations about Alzheimer’s altogether.

What helps everyone is continued contact and conversation – at whatever level is possible. Many healthcare professionals are certain that at some level, a person with Alzheimer’s knows what is happening around them and what is being said. Even one-way conversations can be helpful in maintaining that relationship.

Simple social courtesies have to be introduced that may seem a bit strange for family members or former co-workers. Stand directly in front of the person, don’t tower over them, make eye contact, speak in a normal tone of voice, and maybe even introduce yourself again: “Hi, Betty, I’m Ellen. We used to work together.”

It can be especially disheartening to try to correct the person with Alzheimer’s. “No, it’s Tuesday. Tuesday, not Saturday. Tuesday!” The best advice is to just go with the flow.  What difference does it really make? 

That can be especially challenging for young children. Reassurance, encouragement and example go far in helping kids share their lives with their elders who are dealing with some very difficult challenges. But the energy and vitality that children bring may be a salve that truly helps an individual along the Alzheimer’s journey. 

One activity that seems to have remarkable impact is music. More and more memory care facilities have found that playing favorite tunes can bring people out of themselves.  If they want to wear out that Andre Rieu CD and it gives them pleasure, so be it. If it’s Bing Crosby that opens their eyes and ears – and maybe vocal chords – then play away. Music has an intrinsic value and is often one of the few things that has deep staying power.

One last thing to consider is getting out. Try not to be trapped in your own house. A favorite restaurant, fast-food joint, park, beach or mall can provide important stimulation. The Pierce County Aging and Disability Resource Center (253-798-4600) has little cards that you can have with you to share discretely with clerks, wait staff or other people you may encounter: “Pardon my companion. My companion is living with Alzheimer’s / dementia. We may need extra time or assistance.” 

Alzheimer’s is a long journey for everyone. There will be difficult times as well as moments of profound joy. Caregivers, family members and friends all need to truly “be with” a person with Alzheimer’s.

Support is important. Connect with the Alzheimer’s Association at www.alz.org. Call their 24/7 helpline at 800-272-3900.

Alzheimer’s, after all, doesn’t affect just one person. It’s a family disease.

 

Bob Riler, who wrote this article, is a community outreach and education specialist for Pierce County Human Services and Aging and Disability Resources.