Understanding & Supporting People with Dementia – Person-Centred and Dignified

Those affected alongside

Dementia affects not only those who have the illness but also their relatives – they are often referred to as ‘the second patients’. Relatives experience the gradual loss of a loved one (who changes and may no longer recognise them – a ‘farewell in instalments’/‘grieving for someone still alive’), often bear years of caring responsibility with enormous strain (physical, emotional, social, financial), and go through an emotional rollercoaster (grief, being overwhelmed, guilt, anger, exhaustion, but also love). When the person with dementia moves into a care home, this is often associated with feelings of guilt for the relatives (‘I have failed/shunted him off’). For care staff it is important to see relatives not merely as ‘visitors’ or even a ‘disruptive factor’, but as people affected alongside and important partners.

Supporting relatives includes: involving them (as experts on their loved one – life history!, as partners in care), informing them (about dementia, how to deal with it, the person’s condition), taking their strain and feelings seriously (listening, showing understanding, relieving guilt), pointing out relief and support (counselling, self-help groups, services), and building trusting cooperation.

Partnership instead of conflict

Working with relatives is not always easy: some are very demanding, critical, mistrustful or over-involved – often out of guilt, worry, helplessness or grief. Those who understand this do not react defensively or dismissively, but with empathy: behind demanding criticism there is often worry about the loved one and one’s own helplessness. Good cooperation is achieved through: appreciation and involvement (taking relatives seriously as experts on their loved one and as partners, using their knowledge – life history!), communication and transparency (informing, being reachable, listening), taking their feelings seriously (acknowledging and relieving grief, guilt, worry), and enabling participation (relatives can contribute and take part in care/in the person’s life if they wish). Particularly important is relieving feelings of guilt: many relatives benefit from hearing that they have cared for a long time and lovingly, that moving into a care home is not a ‘defeat’ but often the best solution for everyone, and that they can continue to be an important part of their loved one’s life.

For care staff, good work with relatives is important for several reasons: relatives are experts on their loved one (life history, preferences, habits – indispensable for person-centred care), they are an important part of the life and identity of the person with dementia (belonging, relationship), and good cooperation makes care more pleasant for everyone (fewer conflicts, more trust). At the same time, relatives themselves need support and relief – care staff can point out counselling services (e.g. from the Alzheimer Gesellschaft [German Alzheimer’s Society], care counselling), self-help groups and other support. Supporting relatives is thus an important, often underestimated part of dementia care – it serves the person with dementia (who benefits from good, relieved, involved relatives), the relatives themselves (who need support and understanding), and care staff (who benefit from the cooperation and knowledge of the relatives). Working with relatives in a way that is collaborative, appreciative and relieving is an expression of holistic care that considers the whole system (person with dementia + relatives).

Three groups, one system

It helps to picture the situation as a small system with three groups: the person with dementia, the relatives and the care team. Each group gives something to the others and needs something from them. Figure 10.1 shows these exchanges. Relatives give life history, familiarity and presence. The team gives skilled care, information and relief. The person with dementia gives the reason for everything, and also the relationship that holds the relatives to the care home. If one link breaks, for example when relatives feel excluded, the others suffer as well.

Notice the two arrows between relatives and team. The upper arrow carries knowledge that the team cannot get anywhere else. The lower arrow carries what relatives often lack: someone who listens, explains and shares the load.

What the World Health Organization says about family carers

The World Health Organization (WHO, 2026) states in its dementia fact sheet that informal carers, such as family members and close friends, provide on average five hours of care and supervision per day. It also reports that about half of the global costs of dementia in 2019 were linked to care by informal carers, and that women provide most of these care hours. The same text notes that caring can affect the carer’s own health and wellbeing. These figures describe the world as a whole, not Germany. They show why relatives deserve to be seen as people with needs of their own and not only as helpers.