Course taster

A brief history of dementia care

The history of dementia care and how cognitive impairments, in general, have been defined is complicated (Kitwood,1997). The experience of old age varies considerably around the world. In Western Europe, older people's role within the family and the community has changed. In the past, involvement and productive activity from older people were expected and encouraged (Nolan et al, 2004). If and when it was needed, older people received care within that same community. Women were the main providers of care, with the main burden of care often falling disproportionally on daughters, daughters-in-law, wives and mothers. Today, governments are expected to take a greater role in the provision of care, mainly due to smaller family sizes and the greater involvement of women in the labour force (Nolan et al, 2004). However, Lewis et al (2010, p.35) state that "the majority of social care costs fall on unpaid 'informal' carers - usually the spouse or a child of the person with dementia".

Even in the past, not everyone was fortunate enough to be supported at home. The number of people in institutions increased considerably during the 19th century. These very large institutions, referred to as asylums, had space for 1,000 patients (Kitwood and Benson,1995).

Later, as medical knowledge grew, 'abnormal behaviours' previously thought to be regarded as a moral inadequacy or congenital deficit began to be categorised as disease conditions (Kitwood, 1997). This coincided with increased medicalisation and expectations of a 'cure' for many disorders, particularly in the area of psychiatry. At this time, the prevailing model for understanding dementia was based on a biomedical approach: a perspective that concerned itself largely with the biological aspects of an illness (Cahill et al, 2012).

The first scientific investigations - including the work of Alzheimer - occurred around this time. In November 1901, Dr Alois Alzheimer, a German neurologist, made his first examination of a 51-year-old woman named Auguste Deter who was experiencing problems with memory and language, as well as various psychological problems, such as disorientation and hallucinations. Auguste Deter died on 8 April 1906. With her family's permission, Dr Alzheimer performed an autopsy on her brain. When he examined it, he observed extensive atrophy, especially in the cortex – the thin outer layer of grey matter that is involved in memory, language, judgement and thought in general (McGill University, 2013).

This and other scientific approaches have greatly increased our understanding of dementia and how this affects brain function, as well as the possible risk factors that predispose people and the treatment options available (Cahill et al, 2012).

In recent years, important changes have begun to take hold in the way that people with dementia are viewed. The late Tom Kitwood and the Bradford Dementia Group broke new ground with their emphasis and focus on the person (the person-centred approach), and not just for dementia. Kitwood (1997) urged us to consider that people with dementia are human beings whose subjective experience is greatly influenced by contextual, environmental and cultural factors, including societal attitudes (Kitwood, 1997). In recent years, much of the research in this area has been aimed at understanding the experiences of individuals with dementia, rather than concentrating on dementia as a problem that needs to be solved (Cahill et al, 2012).

Based on this approach, experts have more recently attempted to extend his theory by moving beyond personhood and by arguing that people with dementia are also citizens with rights and responsibilities. People with dementia may then demand the same rights as any other citizen - the right to live within their local communities and within society at large (Cahill et al, 2012).

This approach:

...allows us to consider the salient role that public perceptions of dementia play and draws attention to the role of public and professional attitudes in advocacy work and in the care of people with dementia.

Cahill et al (2012, p.16)

Activity 1.2

Read the executive summary of Dementia: a public health priority.

This document is internationally focused and examines dementia as a public health priority. Pull out three points and explain their relevance and importance to your specific context (where you live or work).