Dementia residential groups as an alternative to nursing homes
How to deal with relatives with dementia in a way that preserves their dignity?
Those who care for family members with dementia face the increasing risk of sooner or later becoming care recipients themselves. Even a high level of resilience and a stable nervous system cannot withstand the strain of an ill family member in the long term.
If a physical handicap (such as a fracture of the neck of the femur) is added to the mental impairment, 24/7 all-round care is practically unavoidable. For the relatives, however, this is no longer possible beyond multi-generational large families in the countryside. Even if it is desirable to remain in the familiar environment, this is usually not possible in the long term.
In such cases (and unfortunately often only then, when the overstrain of the relatives – also recognizable for third parties – has manifested itself) a relocation to a nursing home is usually considered. They hope that their relatives will be cared for by qualified staff – only to find out later that the professionals in the nursing homes also have their problems with caring for dementia patients.
Dementia often manifests itself not only in mental confusion and anxiety. For example, electric cables are perceived as snakes from which one must protect oneself – and later the dementia patient is surprised that the bedside lamp no longer works when he has pulled the plug out of the wall.
Much more problematic is that in many cases the hardly comprehensible fear quickly turns into aggression. Scratching and biting seniors, who can no longer be helped even with good coaxing, are a problem for every caregiver that can hardly be overcome. In order not to let the daily routine for the caregivers get completely out of joint, people then like to resort to medical help. In the number of drugs administered per day, it is easy to hide more drugs that can be used to steam the patients. If necessary, a court order can be obtained to allow mechanical restraint of the patient.
Residential group instead of fixation of dementia patients
Against the background of these prospects and the realization that they can no longer provide the care service even with the support of an outpatient care service or an Eastern European helper (however booked), many relatives then look for another solution to hand over the dementia patient to professional hands for care.
For some years so-called living groups for dementia patients have been established in more and more cities due to the continuously increasing demand. Partly these living groups developed as offshoots of traditional old people’s or nursing homes or facilities for assisted living. In part, these living groups developed as self-help on the basis of private initiative of affected families. In the meantime, the database of the dementia guide lists almost 300 of these living groups in Germany alone.
Photo: Georg Eichinger / WG-Qualitaet.de
In such residential groups, ten people with more or less dementia usually live in a kind of family, which is cared for around the clock by about fifteen outpatient caregivers in turn. This has the operational advantage that no living space has to be provided for the caregivers – and the caregivers have the opportunity to close the door after their shift and get back to their normal lives without being surrounded by dementia patients around the clock.
In the case of private initiatives in particular, caregivers are usually joined by family members: they often have to commit to spending a fixed number of hours per month on certain activities (from shopping to cleaning the sanitary facilities).
Because the residents not only bring along parts of their familiar surroundings such as furniture and books, but also should not lose contact with their relatives, it is desired that the relatives continue to care intensively for their demented relatives. But unlike private care at home, which allows relatives to relax a little at the most in the form of short-term care, the residential groups offer the opposite option: One can actively take care of the family member without having to be permanently under the prere of care.
Precaution is often seen as breaking a taboo in the case of dementia
The dementia of a relative is still often treated as a taboo – not least because every relative is seen in this context as a potential future dementia patient. At the same time, it is by no means mandatory that the relatives must also fall prey to dementia. And nevertheless nobody wants to deal with the development of demented patients without direct compulsion of necessity. One waits until it is too late, instead of dealing with the problem in time.
Who does not want to orientate himself on the last minute and does not want to hope for a passing away of the relatives without dementia, should deal in time with the possibilities, which are offered in dementia living groups. Many of the residential groups are interested in neighborly support, even without a demented relative having to live in the residential group.
Who wants to deal early and without concrete prere to act with the topic of care for dementia patients, finds at WG-Qualitaet.de, the association Leben wie ich bin and the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth provide helpful information on the quality of life in these facilities.
A fundamental problem of most online sites on the subject is that they are often pages from temporary projects that are no longer maintained after the end of the project funding. At the beginning of the research for this article, the database mentioned above had also succumbed to digital dementia and needed a little attention from the webmaster in charge. Those who are now inspired to take the initiative to found a residential group for dementia patients and other elderly persons can also find out more at Nakos, the German working group for self-help groups.