Course content – PFLEGE-16
The modules of this course – work through them in order.
11. Module 10 · Supporting relatives
11.1. In depth: the relatives’ journey and the help that exists
The relatives’ journey and the help that exists
Supporting relatives
| Aspect | In concrete terms |
|---|---|
| Involve | As experts/partners, use life history |
| Take feelings seriously | Acknowledge grief, guilt, worry |
| Relieve | Ease feelings of guilt, point out support |
| Cooperation | Transparency, empathy, participation |
The ‘farewell in instalments’
A central element of relatives’ experience of dementia is a particular form of grief – often described as a ‘farewell in instalments’, ‘anticipatory grief’ or ‘grieving for someone still alive’. Relatives experience how their loved one increasingly changes and ‘disappears’ through dementia: they lose their abilities, their personality seems to change, they may no longer recognise their relatives, and the shared history/relationship as it was is lost. This grief is particularly hard because the person is still alive and still there – one grieves for someone who is still present but is no longer ‘the same’. In addition, there is often a distressing ambivalence: one grieves and cares at the same time, loves and is at the same time exhausted/overwhelmed, and sometimes (guiltily) wishes for an end to the strain. These complex feelings, often laden with guilt, are normal and understandable, but hard to bear. For care staff it is important to understand this particular grief and take it seriously: meet relatives with understanding, acknowledge their conflicting feelings (love and exhaustion, grief and relief) without judgement, relieve them of guilt (these feelings are normal, not a ‘disgrace’), and listen to them. Sometimes an understanding conversation, acknowledging their strain and their love, is the most valuable thing care staff can give relatives. Pointing out professional support (counselling, self-help groups, psychological help) can also be important. Understanding relatives’ grief links the dementia course with end-of-life care/grief (Course 17) and psychosocial topics. It makes clear that dementia care is always also support for the whole system (person with dementia + relatives) – and that empathetic support for grieving, strained relatives is an important, human part of this task.
This shows: good dementia care encompasses the whole person and their environment – the relatives who suffer and grieve alongside them also deserve understanding, appreciation and support.
Five stages of a family’s journey
Relatives do not feel the same thing throughout. Their needs change as the illness changes, and a response that helps at one stage can miss the mark at another. Figure 10.2 sketches five stages that many families go through. It is a thinking aid drawn from general professional knowledge. Not every family follows this order, and some stages overlap.
Read Figure 10.2 from left to right. In stage 3 the relative’s need is not persuasion but honest advice without blame. In stage 4 many carers say “you can relax now”, yet the relative often feels more tense, because the daily task has gone but the worry remains. Offering a clear role, such as helping at mealtimes or bringing photographs, can turn visits into something meaningful.
Behind the complaint: reading difficult behaviour
Complaints from relatives can feel like attacks. A useful habit is to ask silently: “What is this complaint asking for?” A relative who says “She is wearing someone else’s blouse” may be asking to be told that her mother is still seen as an individual. A relative who says “Nobody ever tells me anything” may be asking for a regular, predictable contact. A relative who says “You are not doing enough” may be carrying guilt about not doing enough himself. Answering the need behind the words does more than defending the facts, though the facts should still be checked and, where there was a real mistake, admitted openly and corrected.
There are limits. Respect for relatives does not mean accepting threats, insults or pressure to do something unsafe or unlawful. In such situations you stay calm, name the limit politely, involve a team leader and record what happened. Module 11 shows one example: a relative who asks for bed rails “for safety”.
Relatives, privacy and decisions
Relatives are partners, but they are not automatically the decision-makers. An adult with dementia keeps their own rights. Where a person can no longer decide, a decision may come from someone with a power of attorney or from a legal custodian (rechtliche Betreuung) appointed by the court, and the person’s own wishes still count (Module 11). German law gives close relatives only narrow powers of its own, so ask your manager what applies. Information about health is sensitive, so your organisation’s rules on confidentiality and consent decide what you may share and with whom. If you are unsure, ask your manager before you answer, and be open with the relative about why you cannot say more yet.
Help that relatives can use in Germany
- Section 45 of the Social Code Book XI (SGB XI), the law on social long-term care insurance, obliges care insurance funds to offer free courses for relatives and other volunteer carers. The courses aim to make caring easier and to reduce physical and emotional strain, and they can take place at home on request (Bundesministerium der Justiz, n.d.-a).
- Section 7a SGB XI gives people who receive benefits under this law the right to individual care counselling (Pflegeberatung) and help in using services. At the person’s request relatives can take part, and counselling can take place at home or in a care facility (Bundesministerium der Justiz, n.d.-b).
- Section 44a SGB XI provides a wage replacement benefit (Pflegeunterstützungsgeld) for employed relatives who take short-term time off work, for up to ten working days per calendar year, in an acute care situation (Bundesministerium der Justiz, n.d.-c).
- The Alzheimer Gesellschaft, named in the original text, and local self-help groups offer counselling and meetings with others in the same situation. Check the contact details in your region before you pass them on.
Rules and amounts change. Tell relatives where to ask, such as the person’s care insurance fund, and do not promise specific benefits. This course does not give legal or financial advice for individual cases.