Do you know someone with dementia? Do you have a hard time figuring out how to talk to them or what you can do to help? Are you not sure how to talk to friends about a recent diagnosis of dementia in your family? This article is from the Alzheimer’s Association in Denmark and gives 7 tips on how you can help a person with dementia (and help yourself to learn more about it on the way).
Happy reading and I hope it brings good experiences!
I have made my own translation from Danish, so some of the words may be changed, but the meaning has been preserved. I have also removed the videos, as they are in Danish. Dette indlæg er oprindeligt på dansk, læse det her (og med videoer).
7 tips for how to help a person with dementia
1. See the person behind the disease
People with dementia are as diverse as everyone else and deserve the same respect and consideration you give other people. Avoid, for example, talking about a person with dementia when they are present, instead talk to or with them.
(When I was working on a research project using smart home technology for people with dementia here in Denmark, the professional caregivers told me that it was actually illegal to talk to the family members about the health or treatment of a person with dementia when they weren’t present.)
Therefore, focus on everything that the person still is. A person with dementia is a human being with thoughts, dreams, and desires – just like everyone else.
If you only see the syndrome, you risk that the myths, prejudices, and taboos about dementia take hold and shadow the most important thing – the individual person – which still exists despite the symptoms.
It is a myth that all people with dementia cannot remember. It is also a myth that only very old people risk developing dementia, or that people with dementia do not have feelings, and therefore it does not matter how you talk to the person who has dementia.
Nor is it true that it doesn’t help to rehabilitate people with dementia after an operation. Although the person with dementia cannot be rehabilitated to the same level as before the operation, they still benefit from rehabilitation. It may also help to slow the progression of the symptoms.
Life with dementia is worth just as much as everyone else’s life. Therefore, give a person with dementia the same chance you give other people you meet. It helps more than you might think.
2. Stay in Touch
Socializing with others has a positive effect on how people with dementia live with the syndrome. Try to keep in touch, even if you cannot be together in quite the same way as before.
Dementia is a challenge for everyone. Even the closest friends can have difficulty finding their rhythm when they are with someone with dementia. People with dementia and their families often find it difficult to stay in touch with friends and acquaintances. Dementia is an insurmountable obstacle, and the person with dementia and families therefore risk being isolated and lonely. This helps no one.
We know that good social relations and contact with others might help to delay the progression of the symptoms. Try to maintain contact with the person you have previously had a good contact with. Remember – the most important things remain.
Also think about how you will meet. Big and unforeseen gatherings often make people with dementia feel insecure and frightened. Try instead with smaller events, where you, for example, do something together – take a walk, listen to music, or look at pictures.
It is also important to be with others who are living with dementia in everyday life. New friendships provide the opportunity to share experiences and feelings with others from their own lives to understand how daily life with dementia can be.
3. Be present in the now
Dementia makes it difficult to remember, and the future can be difficult to grasp. The now becomes crucial. Being present in the moment allows you to listen and pay attention. Being together in this way for meaningful for both of you.
Now is the only place we have together. Being present in the moment means to be together on what is or happens here and now.
This becomes especially evident when meeting with a person with dementia. Dementia steals all or part of the ability to remember what happened a few minutes ago. Dementia may also mean that parts of the past and the idea of the future disappears. The Now will therefore be crucial for a person with dementia.
By concentrating on what is happening here and now in the company of the person with dementia, you are listening, attentive, and present. For the interaction to be good, the person with dementia needs to feel comfortable. They must know that they are respected. It is also important that they are helping to set the pace and what the visit should be about.
Many people experience that it can be difficult to be with someone with dementia. It can easily be experienced as awkward and contrived if you are constantly afraid of saying or doing the wrong thing. But keep in mind that you can. Through presence, curiosity, and gentleness, you both can experience good moments together. And the person with dementia will not feel judged and face demands they cannot live up to.
The state of a person with dementia can vary greatly from hour to hour and from day to day. What could be done at one time cannot be done in the next moment, and might be possible again the day after. Therefore, it is necessary that you meet the person with dementia where they are in the now. Take stock of the situation and see what can be done right now.
When dementia is very advanced and the language has gradually disappeared, you can perhaps sit quietly together and hold hands. Just be there, and show with your body language that you want to be together. This can often be the best togetherness.
4. Talk openly about dementia
Be open about the syndrome. It creates awareness in family, friends, and colleagues.
A dementia cannot be seen. Friends, neighbors, and work colleagues will therefore rarely know that the family is affected by dementia – unless they talk about it themselves. You cannot count on understanding, unless you yourself are open about dementia. Openness makes it easier for family and friends to offer their support. Openness also makes it easier to receive advice and assistance the surroundings can provide.
Hiding the disease may also mean that both the person with dementia and their family withdraw from social activities. The risk of being isolated and lonely increases. At worst, it may aggravate the symptoms. If you are brave enough to talk about dementia, give others the opportunity to be brave enough to ask questions. In this way, you build a common understanding that will make it easier for you and your loved ones.
It may also be necessary to help those around you to understand what dementia really is as an illness. There are still many myths and prejudices about dementia. And they can hurt. But remember that very few people actually know the challenges faced by people with dementia.
To tell openly about the grief one has experienced in connection with dementia, or the difficulties encountered, can also be experienced as a relief. You get to vent some of your emotional distress, and it may even provide more energy.
There are many families who are affected by dementia. More than 400,000 people (in Denmark) live with dementia in everyday life – either because they have dementia, or because they are relatives to someone who has dementia. Meeting others who are in the same situation as you can be a great help to cope with everyday life with dementia. Talking openly with people has a special value. And the first step on the way to meet others in the same situation is to open yourself up to others.
5. Remember your own life
When you are close to a person with dementia, it requires energy. To conserve energy, it is important to have a free space with time for yourself.
If you are close family to a person with dementia, you play an important role. The person with dementia needs you, and as the dementia progresses, you will often have to take on more and more tasks.
It can be a great emotional and practical challenge that is not always easy. Relatives of people with dementia therefore have a greater risk than others to experience stress, become depressed, or burn out. And this helps no one.
It is also important to have time to be with others … alone.
It is of course easier said than done. Therefore, you also need to recognize that at some point will need help, both from professionals and from others. It sounds trite, but without help, things can quickly get much worse. Therefore, regularly and continually consider what support you need so that you do not stand alone with the tasks.
Teach yourself to say yes to the help of others – even if you’re used to being in control of your life and doing things yourself. Perhaps it may be helpful to remember that it is not in the person with dementia’s best interest that you as a relative wear yourself out.
7. Avoid reprimanding
Reprimands and criticisms often create conflicts and frustrations. Try instead to highlight the things that still succeed and what the person has accomplished in life. It is the healthy person who must make this change – the person with dementia cannot.
The pain of slowly losing someone you love will always be there. It makes it, for example, painful to see how a person with dementia has a harder and harder time remembering. And it can be hard to accept that normal everyday things are becoming increasingly difficult to do.
But the pain is not lessened by trying to hold onto what was before. The struggle to maintain the person with dementia as they once were is a battle you cannot win. You instead risk pushing the person with dementia away from you. They may isolate and withdraw into themselves so as not to be hurt and upset.
If we continue to reprimand, it can itself break down the person with dementia’s self-image and ultimately their self-esteem. Try instead to highlight the things that still succeed and what the person has accomplished.
With dementia, misunderstandings can easily occur. Damage to the brain makes it both difficult to perceive a message and also to act on it. It is important that you meet the person with dementia with respect, dignity, and positive affirmation. The helping hand must be gentle – almost invisible, and on the person with dementia’s terms.
People with dementia often find themselves in situations that they find it difficult to see and recognize. They feel lost and need to be met with gentleness and empathy. That’s why the healthy relatives, friends, or colleagues must take the initiative – the person with dementia cannot.
8. Seek out knowledge about dementia
The more you know about dementia, the better you will be able to help a person with dementia. Therefore, do the person with dementia and yourself a favor and learn more about dementia. This of course applies to all staff at nursing homes, in home care, and at hospitals, where knowledge of dementia is essential to the quality of treatment and care for patients who have dementia. But also relatives, friends, and others who meet with someone with dementia need knowledge about dementia. You can find out more on alzheimer.dk and through the Alzheimer’s Association.
It is, for example, important to know that dementia not only causes problems with memory. Dementia is caused by a syndrome that attacks the brain. As the syndrome progresses, more areas of the brain are affected and the person will find it harder and harder to cope with ordinary everyday activities.
If a person with dementia does not respond when you talk to them, it’s not because they are rude or have not heard you. It may be that the brain, due to the illness, has difficulty understanding and reacting to what you say. The person with dementia therefore becomes confused and doesn’t know what to say. When you repeat the question or raise your voice, you run the risk that they will be even more confused, scared, or sad. And this helps no one.
Knowledge of how the syndrome affects the brain can also help when you are with a person with dementia. For example, avoid asking too many questions. Give the answer instead. A person with dementia may, for example, completely forget what they have just eaten for lunch. Due to the illness, the brain does not store this in the memory. The question “What did you eat for lunch today?” will be impossible for them to answer. Instead, give the answer yourself – for example, “That was nice chicken we had for lunch today.”
Do the person with dementia and yourself a favor and learn more about dementia.
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