Being diagnosed with Alzheimer and then …

When talking about dementia, the emphasis is often on loss. However, that is not the case on day one. Therefore, after the diagnosis Alzheimer it is important for the person with Alzheimer and the people around him or her to look for ways to stay active and to continue to live their lives as well as possible.

The diagnosis Alzheimer means the diagnosis of a disease that has an impact on all areas of life. A lot of attention is paid to solutions in healthcare, but Alzheimer is more than a medical diagnosis; it is also about the social life of people. Who am I? What can I? What do I want? How can I stay active?

The diagnosis Alzheimer is not strictly a disorder of memory. In fact, it usually involves many mental processes, including the abilities to focus attention, organize thoughts, and make sound judgments. Alzheimer may also affect emotions and personality. However, the biggest misconception is to see a diagnosis Alzheimer as the end.

Life after the diagnosis Alzheimer

There are ways to enjoy life after the diagnosis Alzheimer both as caregiver as well as the person affected. To reinforce this positive attitude and provide structure in the journey, rituals or schedules may play a huge role.  Basic structure and rituals can be established and reinforced such as:

  • Calendars & continuing activities

Having a common thread among events throughout the day or the week will help people feel more comfortable and “connect the dots”. It is important to put the person with Alzheimer in the center.  What does he/she needs to continue to follow life as simply as possible? For example: if someone has always taken piano lessons, how can that be continued. Can the piano teacher come home or is there a student who wants to play the piano with him/her?

In a professional setting of a facility, it also helps the team to engage the residents when there is a lot of overlapping elements between programs.

  • Themes

Going slightly further, themes are a great way to orient people (Valentine Day, St Patrick’s Day, 4th of July, etc.) and they also help to provide consistency. It’s a great way to support creativity when it comes to experience and engagements. In our next blog we will share some ideas for celebrating St Patrick’s day with people with Alzheimer. In general sing-alongs, themed dinners, dedicated craft work and dancing can be successful elements in such a program.

  • Establish rituals throughout the day

Having events happen at set times help people that have the diagnosis Alzheimer to be oriented. It is essential to connect with the living environment and individual needs of people with Alzheimer. This may require a certain amount of creativity. A source of inspiration may be tips from other people with Alzheimer and their loved ones about dealing with everyday things and dealing with others.

Having events happen at set times also supports more efficient staff scheduling and, for dementia care, allows behavior control. Behavior is often worse at the end of the day or at night so establishing rituals around this time is very important and helpful.

You keep in touch by talking about it to each other 

Shortly after the diagnosis Alzheimer, it is often a relief for the person with Alzheimer and also their loved ones to talk about it. By talking about it with each other you stay in touch and maintain the relationship.  So, do you have any form of Alzheimer? Tell it. Do you notice that someone has it? Try to help. As people with the diagnosis Alzheimer often say: “Talk to us, not about us”.

Sometimes people don’t talk about it, because of the fear of gossip or shame. But breaking a taboo is only possible if everyone talks about it. This is a responsibility of all involved. From the person with Alzheimer itself, the relatives and caregivers and the environment.

Humor can be very important. I recently talked to a patient in the advanced stage of Alzheimer, who told me after he forgot something “Hello, I am the person with Alzheimer’s!”

Forget the disease, remember the person

Everyone is different. That is why it is important to pay attention to the diversity of people and their different needs. Alzheimer makes the brain less good, but people with Alzheimer continue to have the same needs and wishes as everyone else. We should dwell less on what dementia patients are incapable of and focus more on celebrating what they are capable of doing.


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