When a family member falls ill with dementia, it is a shock at first. Where can family members seek help?
The diagnosis of dementia turns the lives of those affected and their families upside down. When a loved one has dementia, it can be a huge burden for family members as well. Taking care of someone with dementia requires patience, time and energy. Above all, however, many questions arise with dementia: How does dementia develop and what does that mean for future coexistence? Where can I get help? What types of care are there? Susanna Saxl-Reisen from the German Alzheimer Society gives an overview in an interview with the news agency spot on news.
The diagnosis of dementia is initially a shock for those affected and their families. What helps to be able to accept them better?
Susanna Saxl-Reisen: First of all, it is important to realize that dementia diseases progress very slowly in most cases. The skills that are currently available will probably be retained for a long time, even if there are of course gradually restrictions.
What should be the first steps after diagnosis?
Saxl-Reisen: First you should find out about the disease. Then you should think about what precautions you want to take for the future. For example, you should issue a power of attorney to a person you trust. Not only can representation rights be formally defined there, there is also the opportunity to formulate your own wishes and ideas for the future, for example whether you want to be cared for at home for as long as possible or move to a dementia shared flat rather early on. A living will can be useful, but you should get good advice. If you want to write a will, you should do so as soon as possible after the diagnosis.
Where can sick people and their relatives find help?
Saxl-Reisen: There are a number of advice centers that provide support in this situation. Help can be found at the local Alzheimer’s societies, at care support centers, at specialist centers for caring relatives or also at the Alzheimer’s telephone of the German Alzheimer’s Society, where free and anonymous advice on the subject of dementia is offered on request. (Tel: 030 – 259 37 95 14, Monday to Thursday from 9 a.m. to 6 p.m., Friday from 9 a.m. to 3 p.m.)
What mental and physical changes do relatives have to adjust to?
Saxl-Reisen: In the case of dementia, the changes in cognitive or mental abilities are the main focus. Short-term and later also long-term memory decrease, the ability to concentrate and attention as well as the understanding of complex relationships deteriorate. Difficulties in finding words and other language problems can occur, and the ability to orient oneself decreases – at first especially in new places, and then in the course of time in familiar surroundings and even in one’s own home. Time orientation is also becoming more difficult. There can also be changes in behavior, such as lack of drive, depression or severe mood swings. Physical changes usually only occur later in the course of the disease, then incontinence can occur, and later problems with locomotion.
How does the disease change how you interact with each other?
Saxl-Reisen: Independence is increasingly restricted due to dementia. This changes the roles in partnership and family. Spouses experience the loss of their (conversational) partner on an equal footing, children find themselves in the situation of having to make decisions for a parent. Above all, however, it is important that relatives adjust to the changes and accept that the sick person is simply no longer able to do certain things as they used to. If possible, they should not point out the deficits, but continue to include those affected in everyday life as far as possible. It is important to keep strengthening the skills that are still there, and thus to enable the patient to continue to experience success. If possible, decisions should also be made together with those affected.
What types of care are there?
Saxl-Reisen: There is a whole range of support and care offers. Ambulatory care services primarily help with personal hygiene and around the house. (Volunteer) individual care usually takes place for a few hours per month in your own home or as an accompaniment to leisure activities. Care groups are usually offered on one or more days per week for three to four hours; community activities take place there. In day care facilities, people in need of care can be looked after all day several days a week, and a transport service is usually part of the offer. Dementia flat shares are an offer for permanent living, where up to twelve people live together and – usually with the involvement of relatives – are looked after and cared for. Residential care means permanent living in a care facility.
When does care in a nursing home make sense and how do you make the patient understand it?
Saxl trips: At a certain point in time, care at home is usually no longer possible. This is often the case earlier in people with dementia who live alone if they are endangering themselves or if there is a risk of getting lost outside the home. Relatives who live with a person suffering from dementia often reach their limits if, for example, the day-night rhythm is disturbed and they themselves no longer get enough sleep, or if, for example, aggressive behavior occurs. It is usually not easy to explain to those affected the decision to move to a nursing home. Some recognize themselves that they are a burden for their relatives and agree to the move, but it is often necessary for the relatives to make this decision themselves without being able to get consent from those affected. Most of the time, however, life in the care facility is accepted after a certain period of acclimatization – as long as the conditions and treatment in the facility are right.
Are there certain requirements for home care?
Saxl-Reisen: Anyone who takes on the care of a person with dementia at home should be aware that this is a long-term task – not a sprint, but a marathon. Therefore, it is important to involve further support as early as possible. This can be other family members or people from the circle of friends as well as professional support offers. You should also consider at an early stage whether the apartment is already adapted to a later, higher need for care, whether tripping hazards should be removed or whether a floor-level shower should be installed. You can get tips from housing advice centers and also from care support points.
Are family carers entitled to financial support?
Saxl-Reisen: The long-term care insurance provides those in need of care with various services at different levels depending on the degree of care. This includes the care allowance, which can be used freely, benefits in kind for the use of outpatient care services, benefits for day care and also benefits for so-called preventive care if the relatives caring for them are temporarily absent, for example due to vacation or their own illness. Up to 4,000 euros will be covered for the cost of adapting the living space. The long-term care insurance also provides grants for living in a nursing facility.
Financial support for family carers themselves is very limited. Anyone who works can receive care support allowance for ten days a year in crisis situations in order to reorganize the care situation (this is roughly analogous to wage replacement benefits if a child is ill). There are also options for temporary release from work or reduction of working hours under the Caregiver Leave Act or the Family Caregiver Leave Act. In addition, contributions are paid into the pension insurance for caring relatives who do not yet draw a regular old-age pension themselves.
Are there training courses and if so, what do they include?
Saxl-Reisen: There are various training courses. Many Alzheimer’s societies, but also other sponsors, offer the training series “Help with helping”. There you can find out everything you need to know about dementia, dealing with the sick, adapting to everyday life, ways to relieve yourself, but also about legal issues and the benefits of long-term care insurance and the like. In addition, there are nursing courses that are offered through the nursing care insurance funds and can also take place at home.
Do you have any specific tips on how relatives can cope with everyday life with dementia patients?
Saxl trips: As the ability to remember decreases, it is very helpful to set up fixed places for important things, such as glasses, wallet or house keys, and also to practice using them. An electronic key finder can also make it easier to search for such objects. Reminders such as notes or the reminder function of the smartphone are useful. A fixed daily and weekly structure can also help to maintain the independence of those affected for longer. Overall, you should try to simplify everyday life, reduce your own demands, for example on elaborate cooking, so as not to tie up additional energy there.
When dealing with difficult situations in public, it is sometimes useful to have a so-called understanding card with you. The card from the German Alzheimer Society reads “I ask for your understanding. My relative has dementia.” At the supermarket checkout or in a restaurant, you can make it clear why someone is behaving in an unusual way without many explanations.