What does good living with dementia look like?

This post is by Rabih Chattat. Rabih is Professor in the Department of Psychology at the University of Bologna. He works on psychosocial interventions in dementia and the clinical psychology of ageing. This post was originally published on the EPIC blog on 3rd July 2024.

Rabih Chattat

Dementia is an umbrella term used to indicate a variety of conditions characterised by neuronal damage. The most prevalent type of dementia is Alzheimer's disease which accounts for around 62% of all types of dementia followed by vascular dementia, frontotemporal dementia, and Lewy body dementia as the most frequent. Dementia is characterised by a progressive decline in several domains of cognitive abilities such as executive functions, learning and memory, language, perceptual and motor functions, complex attention and social cognition (DSM-5). The duration is up to 12-15 years. 

Cognitive decline has an impact on the person’s capacity to retain information and also to recall memories, communicate and understand others and the world around them, and to perform daily activities. The person becomes more and more dependent in managing daily life, thus relying on others to perform simple activities in the advanced stages of dementia. So-called “psychological and behavioural symptoms” such as delusions, hallucinations, anxiety, depression, and agitation represent a challenge for carers, impact the quality of life of people with dementia and their caregivers and constitute the major cause of institutionalisation.

Stigma in dementia

Several needs of people with dementia are unmet. Not only practical needs but also emotional and relational needs. Kitwood (1997) and Sabat and Lee (2011) were among the first researchers who focus on the notions of personhood and selfhood in the context of dementia.

Kitwood addressed the issue of malignant social psychology to describe how people with dementia are approached and treated by others. In his book, he used several terms to describe the approach of carers such as infantilization, intimidation, labelling by the name of the disease, invalidation, banishment, ignoring, mockery, and withholding.

The impact of stigma toward dementia can be considered at different levels: individual and societal, at the level of the family and at the level of healthcare and welfare, in research and policies. At an individual level, stigma can lead to feelings of shame, low self-esteem, a sense of uselessness, withdrawal from social interaction, social isolation, depression and anxiety. People with dementia, challenged by the consequences of cognitive decline, experience several limitations which impact their emotional balance.

At the healthcare and welfare level, the stigmatisation of people with dementia can be observed at different steps across the care pathway. Since these aspects are related to the context, the multifaceted impact will be discussed in detail:

• Diagnosis disclosure - Even if it is a right for people to receive information about their health condition and it is their own decision to share their health information with others, in the case of dementia this right is not fully respected.

• Advance care planning - Professional carers avoid talking about the prognosis of the disease and professionals' prejudice about the capacity of people with dementia to understand and discuss care options makes planning difficult. 

• Shared decision making - Lack of involvement of people with dementia in decisions is due to the attitude of others, especially the failure to recognise the person's ability to communicate or express preferences and wishes. 

• Behavioral and Psychological Symptoms of Dementia - Perceptions and thoughts (delusions, hallucinations and misperception), mood (anxiety, depression, apathy and emotional lability), behaviour (agitation, wandering, verbal and non-verbal behaviour which can be aggressive or not), sleep and eating changes are considered meaningless symptoms that are challenging and require controlling or restraining the person with dementia. However, they are also an expression of unmet needs, distress, and absence of engagement.

Older people socialising and being active

Good living with dementia

In recent years, there has been a global effort to reframe the vision of care for dementia from a “giving up” approach where, in the absence of treatment people are invited to “give up work, study, and to go home and live the time left” (Swaffer, 2015), to a more balanced approach where the focus is on good care and on promoting quality of life. To achieve this objective, many researchers focus on interventions aimed at enhancing psychological and social well-being. 

Specifically psycho-social interventions are aimed to support people with dementia to adapt and manage their conditions while preserving a sense of self, identity and social participation. Quinn et al. (2022) report key areas of living well identified by people with dementia: being engaged, having an active lifestyle, preserving positive relationships with others, having a good living situation and environment, having security, getting on with life, being able to get out and about, a positive outlook on life, being able to cope, having independence, and having a purpose in life.

Healthcare and welfare systems need to build skills and approaches which are not only focused on meeting basic needs, but also on promoting a more person-centred approach to meet other individual needs such as inclusion, utility, belonging, participation as well as on preserving dignity.