After diagnosis

After diagnosis

A diagnosis of dementia will affect the person in question, their family and their friends. Accepting the diagnosis can be a lengthy process often accompanied by strong emotions. It is common for people to face a crisis following the diagnosis, however, not to say that no crisis is an abnormal or wrong behaviour.

When experiencing strong emotions, people sometimes have difficulties naming them. For the person with dementia it can be further complicated with an already difficulty of finding words. If you find it difficult to address the new situation with the person with dementia, it can be helpful to invite to conversations about what they are feeling. Pay attention to non-verbal signs of emotion and talk to the person with dementia about what you are experiencing. “You seem worried,” or “you look angry”. Allow time for your comment to be processed, and for the person to react. Acknowledge the feelings the person has. Talking about emotions is not dangerous; it can help both you and the person with dementia cope. However, telling them that there is no need to feel sad or worry, they are likely to think that you do not understand how they feel or what they are going through.

Build a care team.

You should allow both yourself and the person with dementia to process the news. If you find the time and energy, you should also use the time before the disease develops further to build a care team. If the person with dementia wants to be involved, start planning and involving other people together. Make a note of offers of help, and do not feel guilty about accepting them. Seek individuals the person knows who are willing to listen and who care. Avoid including people who seem judgmental, critical or blaming.

While the person still has the capacity to consent, you should consider doing some legal planning. Take inventory of existing legal documents, review and make necessary updates. It can be useful to talk about plans for finances and property, and get the person to name someone to make decisions on their behalf when they no longer can. Ensuring that legal aspects are covered can reduce burden later, when the care situation is intensified.

End-of-life planning.

It can be difficult to experience the person with dementia expressing wishes about their end-of-life in the early stages of the disease. However, a big part of the worry after diagnosis for people with dementia is worry about the future. Some find it empowering and that it reduces stress to talk about the future, and their end of life. Conversations about donation of the brain or body for research, autopsy, funeral and burial plans can reduce uncertainty. However, these conversations should not be forced on the person, if they do not want to address it; it is not your responsibility to get them to do so. Rather, try to create an environment where if topics regarding the later stages of the disease comes up, you should listen and take their statements seriously.

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The DemiCare project has been funded by the Active and Assisted Living programme. AAL is a European programme funding innovation that keeps people connected, healthy, active and happy into their old age.

AAL supports the development of products and services that make a real difference to people’s lives - for those facing some of the challenges of ageing and for those who care for older people if they need help.

The project has an overall budget of 2.029.091,76 €, to which the AAL will contribute with 1.477.535,07 €