Dementia – a challenge for relatives

Dementia changes everything. It changes the sick person as well as the people around him or her. Because often a partner, spouse or children care for a person with dementia. This can make living together more difficult and drain your strength.

As a family member or relative, you can find answers to common questions here. You will also learn how you can help and what you can do for yourself.

At a glance

Family members can support people with dementia: For example, try not to take everything from a person with dementia and keep an eye on treatment. Find out more about the disease and your rights as a family member. There are special training and counseling programs for family members. Sometimes, however, relatives also need help and a break: take good care of yourself. Share your experiences and concerns with other family members, such as in a support group.

Dementia – an overview

There are many forms of dementia. The most common is Alzheimer’s disease.

In dementia, it’s not just memory that deteriorates, but other abilities as well. For example, dementia patients cannot find their way around their home, misplace things or do not recognize familiar people.

Even talking is often difficult. How patients struggle to find words and sentences. "Normal" conversations Conversations are hardly possible because the same questions are always asked.

In addition, those affected are sometimes as if changed: they cannot control their emotions, wander around, are suspicious or sad. Many behave aggressively at times.

Most forms of dementia – including Alzheimer’s disease – are not curable. However, medication can delay mental deterioration in Alzheimer’s dementia somewhat and enable independent living for longer. Other methods can also contribute, for example occupational therapy. What comes into question depends primarily on the form and severity of the disease.

Nevertheless, at some point people with dementia can no longer cope with everyday life on their own. Then they need more help and care.

How can I help?

  • An open approach can create understanding among family and acquaintances. If possible, weigh up together with your family member with dementia how much openness is good.
  • Do not try to take everything from a person with dementia. Let him do small things on his own, like peeling vegetables or getting dressed. This can help to preserve existing abilities. Plan time for this.
  • Many dementia patients are good at remembering things or experiences from longer ago. You can revive memories with photos, mementos, music, familiar smells or outings.
  • Living at home is also possible with dementia. It is important to adapt the home to the new needs, for example with smoke detectors, plenty of light or fuses on the stove. In addition you should eliminate stumbling blocks. Documents such as passports should be kept safe. GPS tracking devices can help with orientation problems.
  • Maintain eye contact during conversations. Use short, simple sentences. Remain patient, even if you have to answer the same questions over and over again. You may also be able to communicate through touch.
  • Outbursts of rage and verbal abuse are often almost unbearable. Even if it’s hard: try not to take it personally. You help your counterpart by providing distraction and not arguing.
    If possible, you can participate in training for relatives. Here you can find out how to deal with difficult behavior and mental abnormalities. There is evidence that such training can improve the situation of the person with dementia.
  • Dementia patients often cannot distinguish day from night. Sleep disturbances are the result. Offer the affected family member enough activity during the day. This can improve the day-night rhythm. Light therapy, on the other hand, does not help here: So far, there is insufficient evidence for its effectiveness.
  • People with dementia are often not hungry or thirsty. Experts recommend that meals be arranged nicely for the person affected, for example with a set, shared table. Good coaxing and praise can also encourage sick people to eat.
  • It is helpful if you keep an eye on treatment. For example, you can watch for side effects of medications, pain, or signs of other illnesses.
  • Consider early on with the person with the illness how to proceed if he or she can no longer make decisions for him or herself. Precautions can be taken with a living will and a health care proxy.

What you can do for yourself

  • Find out about dementia as well as financial benefits and your rights as a family caregiver. You can find information on this below under "Methodology and sources".
  • You can get help with questions and advice, for example, from care insurance companies, care support centers, welfare associations, consumer centers or social and health offices.
  • You can contact family and self-help groups. These often provide advice and offer courses for relatives. You can also talk with others and address concerns.
  • Caring for someone with dementia can cause you to overextend yourself. For example, many relatives give up things that are dear to them, such as friendships or hobbies. It may seem selfish to you that you are enjoying yourself while the other person needs your support. But no one is helped if you do not take care of yourself. Then you lack the strength to care for the sick family member.
  • Let them help you. For example, accept offers of conversation or support from other relatives, from your circle of friends or from volunteers.
  • If you need more support with care or need time off, outpatient care services can relieve your burden. It may also be possible to consider offers such as care groups, residential care communities, prevention, day or short-term care.

Is dementia hereditary?

Dementia can have many causes. Only rarely do disease genes play a role. In Alzheimer’s dementia, less than 5 out of 100 of the conditions are hereditary.

If there is a suspicion of hereditary dementia, doctors should offer you genetic counseling. You can get detailed information there.

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