13. Module 12 · Self-care & documentation

13.1. In depth: self-care on three levels and records that help

In depth

Self-care on three levels and records that help

Dementia care at a glance

ElementCore
AttitudeAppreciation, empathy, dignity
UnderstandingInner world, behaviour as need
Relationship/personPerson-centred, life history, validation
Dignity/freedomSelf-determination, avoiding FEM
In depth

Dignity remains to the very end

Perhaps the most important message of dementia care is: human dignity remains – to the very end. Even in the most advanced stage of dementia, when a person has lost almost all abilities, can no longer express themselves and no longer recognises anyone – even then they are and remain a valuable person with inviolable dignity. This conviction is not self-evident: in a society that often defines people by their performance, their memory, their ‘usefulness’, the worth of people with advanced dementia is sometimes called into question (‘she doesn’t notice anything any more’, ‘that’s no life any more’). But this view is profoundly wrong and dangerous. Human dignity does not depend on a person’s abilities, memory or ‘usefulness’ – it is inviolable and unconditional (Art. 1 GG – Article 1 of the German Basic Law (Grundgesetz): ‘Human dignity shall be inviolable’). A person with advanced dementia deserves the same respect, the same dignified treatment, the same attention as anyone else. And as we have seen (Module 1, emotional memory), they feel very well how they are treated – whether with respect and love or with condescension and neglect. For care staff this conviction is fundamental: it is the foundation of all other principles. Those who see the person with dementia in their inviolable dignity – as a valuable person, not as a ‘case’ or a ‘hopeless case’ – will support them with dignity, take their needs seriously, and give them attention and a sense of security, to the very end. This attitude – unconditional respect for the dignity of every human being, regardless of their condition – is the ethical core of care as a whole and particularly significant in dementia care. Internalising and living it is the most important ‘competence’ in supporting people with dementia. May you, with this attitude and the knowledge of this course, enable the people with dementia entrusted to you to live a dignified, secure life – to the very end.

The course closes with this message: the dignity of the person with dementia is inviolable – and preserving it, giving them wellbeing, safety and relationship, is the fine and meaningful task of dementia care.

Self-care is not only your job

Self-care is often presented as a personal task: sleep, exercise, hobbies. These matter, but they are only one level. Figure 12.2 shows three levels that work together. On the personal level you notice your signs, protect your breaks and keep contact with people outside work. On the team level colleagues share hard tasks, talk after difficult events and notice when someone is struggling. On the organisation level the employer provides safe staffing, fair rotas, training, supervision and a way to raise problems. If the organisation level is weak, the other two levels cannot make up for it, and it is fair to say so.

Three levels of self-careSelf-care on three levelsOrganisationTeamYoupersonOrganisationstaffing, rotas, training, supervision,risk assessment of psychological strainTeamhandover, case discussions, shared tasks,asking “how are you really?”Youbreaks, sleep, movement, friends,saying “I need help”, celebrating small winsEach level supports the others. None replaces the others.
Figure 12.2: Self-care on three levels (thinking aid from general professional knowledge). Source: own illustration.

The team level has special tools. Case discussions and supervision, mentioned in the original text, give space to talk about hard situations with a structure and, in supervision, with an outside facilitator. A short debrief after a death or a violent incident helps teams to process it together. These are offers of the employer, so ask your manager what exists in your organisation.

Records that the next carer can use

Good records separate three things: what you saw or heard, what you think it means, and what you did. Figure 12.3 shows the difference with three fictitious examples. A note such as “Mrs K. was aggressive” says little and may label her for weeks. The same event as an observation (“Mrs K. pushed my hand away and called out when I helped with her blouse at 7 a.m.”) allows the next carer to try something different. Record what helped as well as what failed, because this is the knowledge that gives care continuity.

From label to observationFrom label to observation (fictitious examples)Label (avoid)Observation (write)What helped“Aggressive”7 a.m., pushed my hand away andcalled out while I helped with her blouse9.30 a.m., said what I would do,calm“Refuses to eat”Ate two spoons of soup, turned head awaywhen spoon came from the left; coughed onceSat on right at eye level,porridge; cough reported“Wanders”Walked the corridor 4 to 5 p.m. and said“I must go to the children”Walk together, tea, photographs;settled after 15 minutesSay what you saw, when, and what helped. Keep opinions out of the record.
Figure 12.3: From label to observation, with fictitious examples. Source: own illustration.

Notice that the third column turns a record into a tool. If one carer finds that the corridor walk at 4 p.m. calms a resident, this is worth knowing for the whole team. Records also must be handled with care: they contain health data and life history, so they belong in the organisation’s system, are shared only with those who need them for care and are not discussed in public places.

The legal frame in Germany

In Germany …
  • Section 5 of the Occupational Health and Safety Act (Arbeitsschutzgesetz, ArbSchG) requires the employer to assess the hazards of work, and it names psychological strain at work as a possible source of hazard (Bundesministerium der Justiz, n.d.-a). This is called a Gefährdungsbeurteilung. Ask whether your organisation includes psychological strain.
  • Article 1 of the Basic Law (Grundgesetz) protects human dignity, the idea the original text closes with (Bundesministerium der Justiz, n.d.-b).

Rules on how long and in what form care records are kept differ and are set by laws and your employer. Follow your organisation’s procedure. This course does not give legal advice for individual cases.