Extract from “My Name is not Dementia” (Research conducted in the UK in 2009)

Published by Alzheimer’s Society UK on 15 September 2015
The Centre for Ageing Research and Development in Ireland (CARDI) became the Ageing Research and Development Division within the Institute of Public Health in Ireland (IPH).

Persons with Alzheimers/Dementia were interviewed personally, and the research team determined the following.

The key quality of life indicators and findings, in order of importance:

1. Relationships or someone to talk to
2. Environment
3. Physical health
4. Sense of humour
5. Independence
6. Ability to communicate
7. Sense of personal identity
8. Ability or opportunity to engage in activities
9. Ability to practise faith or religion
10. Experience of stigma

Despite being a progressive, terminal condition that severely affects a person’s mental functioning, dementia may not affect a person’s quality of life in respect of emotions, feelings and mental well-being in ways that one would expect.

Quality of life is defined primarily by the person, as a person, and their circumstances, not their dementia.

Definition of quality of life:

An individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.

A person’s quality of life can be seen to have objective characteristics which can be measured by the observations of a professional (in our case the Matron at Midway Care Centre, Sr Ansovi Schoeman with our house doctor and nursing staff).

If a person’s health status and consequences of health problems are considered central to a person’s quality of life then the quality of life of a person with dementia is likely to deteriorate if measured objectively, as the condition progresses.

Quality of life is not just multi-dimensional; it is multi-perspectival. In other words, how quality of life is understood depends on where you are looking from.

“It’s their quality of life that’s being taken away, not ours”.

Quality of life, then, is a multidimensional collection of objectives and subjective areas of life, the parts of which can affect each other as well as the sum. It is also a dynamic concept, reflecting values as they change with life experiences and the process of ageing.

“Dementia”, once diagnosed, is all too quickly perceived to be the all-consuming feature of a person’s identity. The reality is that people remain complex and multi-faceted and their quality of is life no less complex, it is multi-dimensional and multi-perspectival. In other words, how quality of life is understood depends on where you are looking from.

Midways Observations and Experience: At Midway Care Centre all our staff (even the domestic employees), are trained to observe our residents constantly and meet their specific needs. In our opinion medication does not keep these angels happy, lots of love and attention and a warm and friendly environment ensures that they thrive and really enjoy their life.