Course content – PFLEGE-16

Protecting dignity and freedom

Dementia care touches on central legal and ethical questions (cf. Courses 02/04): self-determination (people with dementia also have rights and a will that must be respected), legal representation (where capacity to consent is lacking – legal guardianship (Betreuung)/lasting power of attorney (Vollmacht), Course 04), and especially freedom-restricting measures (FEM, freiheitsentziehende Maßnahmen). People with dementia are particularly at risk of FEM: bed rails, physical restraints, sedating medication, locking in, low armchairs, mobility aids taken away – often used ‘for safety’ or for convenience. But FEM are a serious intrusion into the fundamental right to liberty and are strictly regulated (Courses 02/04): they generally require a legal basis (the person’s own valid consent or, if they lack capacity, the consent of their legal representative plus approval by the guardianship court – section 1831(4) of the German Civil Code, BGB), are only permissible as a last resort in the case of genuine danger that cannot be averted in any other way, and the principle is: as few FEM as possible – alternatives first.

The reduction principle is central: FEM are professionally and legally problematic, often harmful (they promote decline, falls – e.g. when climbing over bed rails!, restlessness, loss of dignity) and rarely truly necessary. There are almost always alternatives (Courses 02/04): understanding and addressing the causes of restlessness/exit-seeking (Modules 4/8), enabling movement (circular routes, accompaniment), making the environment safe (low-floor bed, floor mat, sensor mat), designing the milieu (Module 7), providing relationship and safety. Care staff should actively avoid and reduce FEM.

Self-determination in dementia, too

An important, often unrecognised principle: people with dementia also have a right to self-determination and dignity – their dementia does not take away their rights as persons. Although capacity to consent may be limited for certain decisions (legal representation then applies, Course 04), the will of the person (including the currently expressed will, the non-verbal will, and the presumed/previous will) must be respected (Course 04, order of priority for establishing the person’s will). People with dementia should decide for themselves as far as possible (in small everyday matters: What would you like to eat/wear? When would you like to get up?) and their wishes and their will (including when expressed non-verbally) should be respected. Paternalism (‘she doesn’t know what’s good for her’) and overriding the person’s will are violations of personhood (Kitwood, Module 5). The significance becomes particularly clear with FEM: a person with dementia who wants to move (exit-seeking) has a right to movement – restraining them ‘for safety’ violates their right to liberty and is usually impermissible and harmful. The task of care staff is to safely enable their need to move (instead of preventing it), to find alternatives to FEM, and to respect their dignity and will.

For care staff the message is clear: FEM must be actively avoided and reduced in dementia – they are almost never the right solution, but usually an expression of the fact that the actual cause (restlessness, exit-seeking, risk of falling) has not been understood and addressed. Better, more dignified care means understanding needs (Module 4), enabling safe movement, designing the environment (Module 7), relationship and safety. On the question of whether a FEM is truly necessary in rare cases, the strict legal requirements apply (approval, Course 04) – this is never a decision for care staff alone. Care staff should critically question FEM, look for alternatives, and stand up for the freedom and dignity of people with dementia. Programmes to reduce FEM show that FEM can be significantly lowered without safety suffering – on the contrary, the overall situation usually improves. Protecting the freedom and dignity of people with dementia – especially against well-intentioned but harmful and impermissible restrictions – is a central ethical concern of dementia care. It links the dementia course with liability/guardianship law (Courses 02/04) and mobility (Course 08).

What counts as a freedom-restricting measure?

A FEM is any measure that stops a person from moving freely, against their will or without their understanding, in a way they cannot easily end themselves. Mechanical measures use a device: bed rails, belts, a chair with a tray that cannot be removed, a blanket tucked so tightly that the person cannot get up. Medication counts when a drug is given to calm or immobilise someone, not to treat an illness. Other measures include a locked door, hidden exits, a keypad whose code is not given, taking away shoes, glasses or a walking frame, or placing a chair so low that rising is impossible.

What counts is the effect, not the intention. Section 1831(4) of the Civil Code (BGB) names mechanical devices, medication and other means, and refers to people in care homes, hospitals and similar facilities, when the restriction lasts longer or happens regularly (Bundesministerium der Justiz, n.d.-a). Treatment of an illness decided by a doctor is a different matter; this course gives no advice on medicines.

Article 104 of the Basic Law (Grundgesetz) allows liberty to be limited only under a formal law and leaves the decision on deprivation of liberty to a judge (Bundesministerium der Justiz, n.d.-b). Unlawful deprivation of liberty is an offence under section 239 of the Criminal Code (StGB) (Bundesministerium der Justiz, n.d.-c).