Alzheimer’s disease: Everyday life

Especially right after they hear the diagnosis, many people feel torn between the desire for independence and the need for security and support. Most people who have Alzheimer’s disease do realize that they will need help at some point. But only very few will find it easy to come to terms with the gradual loss of their abilities and accept the support they need.

On the one hand, most people who have been diagnosed with Alzheimer’s think it is important to live in the present and to enjoy doing what they can still do. On the other hand, many people are worried about the future and may wonder how to go about planning the rest of their life. There are suddenly new concerns to confront: Can I carry on working, and if so, for how much longer? How long will I still be able to drive a car or live on my own? What will I do when I need to be cared for? Who should make my decisions for me when I no longer can? Over time, many people manage to deal with these kinds of questions and conflicts, and come to accept life with Alzheimer’s.

An important part of that is the support they receive from others, and especially from their family. But the disease will also affect relationships with family members and friends.

It becomes more difficult to pursue common interests. Many of the roles and responsibilities shared by family members or couples will need to be reorganized. For example, if a woman who has always kept track of the couple’s finances is no longer able to do so, her husband would have to take on this responsibility instead.

Some people say that the emotional warmth and closeness within the family increased after they were diagnosed with Alzheimer’s. Some couples feel like a team that has to stick together, now more than ever. But there may still be tension and conflicts over the course of the disease. Many family members who care for someone with Alzheimer’s find it hard to cope with, and may need support themselves after a while.

The German Alzheimer's Association (Deutscher Alzheimer Gesellschaft) provides family members with information about coping with loved ones with Alzheimer's.

A lot of people with Alzheimer’s disease benefit from dealing openly with their condition and are met with understanding and support. Humor may also be a good strategy in many situations. But unpleasant experiences, such as failing at something or getting negative reactions from other people, can’t be avoided.

Sharing experiences with others affected by the disease, for example in a self-help group, is often considered to be helpful. It’s important to stay active and keep up hobbies such as singing, hiking, cooking and painting. It is still possible to do many of these activities for a long time despite Alzheimer’s. Activities also help to keep someone’s mind off their disease.

Learning to cope with forgetfulness is particularly challenging. The following can help:

• memory aids like post-it notes, diaries, and mobile phone reminders and apps
• rituals and a fixed daily routine
• a tidy household with fixed places for certain things

It becomes increasingly difficult to remember things over time. It is then even more important to accept help from others.

Helpful everyday tips can be found at the German Alzheimer Association or in the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth's Guide to Alzheimer's.

There will be many decisions to be made eventually: about everyday practicalities, but also about treatments, planning ahead, care at later stages of the disease, and the most suitable place to live (at home, in a nursing home or in group living).

This can make it even more important to make arrangements for the time when it‘s no longer possible to make independent decisions. Appointing a health care power of attorney (POA) will make it clear who will be responsible for doing that later on, and the conditions under which it will take effect can also be stipulated. An advance health care directive can also be used to determine whether and which life-sustaining measures should be taken if the person becomes severely ill.

Information about health care proxies, living wills and patient decrees can be found in the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth's Guide to Alzheimer's.