Dementia in the family: how to deal with change

According to the World Health Organization, there are now about 44 million people with dementia in the world. Every fifth Russian is faced with this severe intellectual disorder in one way or another: dementia can be diagnosed in relatives, friends, acquaintances¹. But most of all we are afraid of changes in the mental state of the closest people – parents, grandparents.

It is scary to watch how the behavior of a dear person changes irreversibly. It is terrible that friends, colleagues, neighbors will find out about the disease and stop communicating or vice versa, they will begin to express sympathy too intrusively. “It is especially difficult to accept the deteriorating state of a loved one for those who internally always strived for stability and believed that nothing unpleasant would happen to them,” says psychologist Zhanna Sergeeva. “Their behavior is often childish – the way a child cries when they don’t take him to the zoo, not wanting to understand that his mother is sick.” The family is one organism. If something happens to one of its members, it affects the rest. The way of life is changing, new lines appear in financial expenses, often a new person comes to the house – a nurse, healthy family members have less and less time for themselves, some plans are falling apart … How can these inevitable changes be made less difficult?

Gather a family council

Get together with the whole family more often to discuss the changes that have taken place and decide what help the family will need and where to get it, what will have to be abandoned, how to distribute responsibilities between close and distant relatives. Those who are sick do not need to participate in these discussions – this can awaken in him a feeling of guilt, which sometimes appears even in the advanced stages of dementia.

Plan your holidays

It is just useful for a sick relative to be present at a discussion of joyful events, this will cheer him up. Festive events should not be too noisy and crowded, but it is worth inviting guests to the house, at least on the most important occasions: so that not only talk about problems sounds in the house, so that laughter and music can be heard. Planning holidays makes you think about the good, adds strength. But it is desirable, of course, that the guests be tactful, cheerful and friendly.

Meet your friends

Often the main care of the sick falls on one person. He has to rebuild his whole life and forget about himself, his interests. He needs to share with someone his grievances, irritation, despair. And tired relatives are often not ready to listen to him. That is why meeting friends is so important. A walk or gathering in a cafe will give you the opportunity to change the situation, talk out and feel a little easier. On forums and websites dedicated to dementia, you can meet those who know this problem better than you, who will give you the necessary advice, support, and share useful contacts. Friends can also provide more radical help – for example, to sit with the sick while you go to a concert or to a hairdresser.

Read more:

• Dementia: how to live with those who are nearby

Talk to children

Even young children feel that something is happening in the family, they begin to sleep poorly, they are more often capricious, they worry that they have ceased to be the center of attention of their parents. Therefore, be sure to take the time to explain to the child what is happening and that changes in the behavior of a loved one are associated with his illness. Children and teenagers can help you as much as they can – for example, take your grandparents to the yard, sit with them for a while, look at pictures, sing a song. But you should not overload them beyond measure – do not make them more mature than they are. Give them the opportunity to live their lives.

Don’t give up on future plans

On the contrary, make efforts to make the main ones come true. Interesting studies, mastering a new profession, trips must be present in your life so that it does not seem that this life has ended ahead of schedule. A sick person needs care, communication, but he does not need you to give him your life. Even in the most difficult moments, do not stop making plans – if not for the near future, but for the next season or next year. It is important to have them – it helps to think that life does not stand still and that you can change it for the better.

Read more about this in the book “Life is near. How to help loved ones with dementia and how to help yourself” (Nikeya, 2016).

¹ The survey was conducted by an interactive information project about dementia memini.ru