Different perspectives on dementia in general, influence the attitude and behaviour of people towards those with dementia. Seeing the person with dementia as someone who has a disease and is “afflicted” by this unknown aetiology can depersonalise the relationship between two people. However, see the person behind the dementia by viewing it a a disability can create a more human and positive attitude towards the person. Now we will look at the term disability and what it means for the individual with dementia.
Dementia is considered an impairment causing disabilities as a result of the social/ structural arrangements in society. The focus is on altering the social/structural environments to eliminate or mitigate the negative experience of disability.
- People make sense of disability in different ways, which are sometimes described as “models” of disability.
- These models have developed over time in a fairly linear fashion but exist alongside each other because different people find meaning in each of them.
- With the possible exceptions of the moral/spiritual and medical model of disability (considered by many as pejorative or an inaccurate interpretation of disability forming the basis for potential abuse, oppression and exploitation), each model aims to be progressive. It builds on some elements of existing models, sometimes responding to a perceived gap or flaw and often having a particular focus (e.g. on societal barriers, human rights or the experience of impairment).
- The way that people make sense of disability can have a considerable impact on the lives of people with disabilities and their family and friends because most models reflect a certain understanding of the cause and hence of the way to address disability.
- Table 1 below provides an overview of how some of the different models of disability relate to dementia and the possible implications of each for people with dementia.
Table 1: (Some) Models of disability in the context of dementia
Model of disability How the model relates to dementia Implications for the person with dementia
Dementia is considered a curse or moral flaw in the individual. Dementia is visited upon the individual as retribution or as a divine test. The person is subjected to prayer, seeking a miracle cure or spiritual ‘healing’
interventions. Some people may feel inspired and able to cope as a result of their religious
or spiritual beliefs.
Dementia is considered as resulting solely from biomedical causes and sometimes perceived as a personal tragedy. The flaw is considered as being in the individual only. This aims to cure or ‘fix’ the person with dementia with medical interventions or make him/her fit in. Others (e.g. doctors) are considered to know what is best. There is
little or no voice for the person with dementia.
Dementia is considered an impairment causing disabilities as a result of the social/ structural arrangements in society. The focus is on altering the social/structural environments to eliminate or mitigate the negative experience of disability. The person with dementia is involved in leading the decisions and in collective action to achieve change.
Dementia is considered a multi-dimensional and a health experience that occurs in a context. Disability, ill-health and human functioning involve interactions betweenbiological, psychological, socialandenvironmentalaspects. Medical, psychological, social and environmental influences on dementia as a health condition, functioning and disability should all be addressed. The person with dementia is involved in decision making and in collective action to achieve change.
Dementia is considered a health condition, which together with contextual factors, accounts for the individual’s (social and psychological) experience of dementia in the broader social context. Thepersonal experienceof dementia (and of related physical, sensory and mental impairments) is considered as well as social and environmental factors. In addition to altering the social/structural environments (as with the social model), there is greater emphasis on how people with dementia experience various impairments
(as well as possible resulting disability) and also require care, support and protection where necessary. The person with dementia is involved in leading decision making and in
collective action to achieve change.
Dementia may be seen as a disability and/ or health condition. The human rights model works with the social model(s) and the biopsychosocial model but recognises the person as an equal citizen (‘rights holder’) and others as having duties and responsibilities (‘duty holders’). The person with dementia has his/her rights upheld and experiences full inclusion and equality. People with dementia are active subjects and fully included citizens (e.g. in keeping with the PANEL principles mentioned on page 14).