“Dementia should be viewed as a disability” – says Trinity academic

Posted on: 29 April 2018

Up until recently dementia has been seen almost exclusively through a biomedical lens and treated solely as a disease by hospitals, nursing homes and society in general, according to dementia expert, Professor Suzanne Cahill. In her new book, the author challenges clinical conventional thinking on dementia, recasting it as a disability and a human rights concern. Dementia and Human Rights was launched in the Royal Irish Academy this week.

“Dementia has been conventionally understood as a syndrome caused by diseases, characterised by plaques and tangles, brain scans, drugs, tragedy, suffering, passivity, and at the extreme, locked doors and clinical technical care,” explains Professor Cahill.

Drawing on her vast experience in the area as Director of the Dementia Services Information and Development Centre, Professor Cahill maintains that people living with dementia are exceptionally vulnerable and at a heightened risk of having their human rights violated.

“There is a gap in our understanding of dementia from a social justice perspective and an urgent need to interrogate dementia using a human rights lens,” says Professor Cahill. 

In this thought-provoking new book, Professor Cahill takes this rights-based approach where the voice of the person with dementia is centre stage and that narrative is carefully threaded through various chapters.  Psychological needs are elevated to fundamental rights and critical issues relating to equality, autonomy, participation, empowerment among others are brought to the fore.

A key message communicated by Professor Cahill is that for people to live well with dementia, policies need to be reframed, prejudicial attitudes must be eliminated, care staff need specialist training and more resources need to be allocated to dementia services.

Using the UN Convention on the Rights of Persons with Disabilities as a prism to interrogate policy and practice, the book critically reviews a selection of these rights both as they apply to community dwelling people with dementia and their family members, and to those living with dementia in residential care settings. Building on the theme of disability, careful consideration is given to the way in which society further disables people living with dementia, through prejudicial and negative attitudes, through poorly adapted environments, and through discriminatory policies that can make life considerably more difficult for the individual and for their families.

Professor Cahill explores the following key questions in the course of the book:

• To what extent is a person’s right to obtain a diagnosis of dementia and have that diagnosis disclosed to them in an ethical sensitive way promoted and respected?
• How likely is it that the individual diagnosed with dementia will be offered post diagnostic services based on a multi-disciplinary assessment?
• How likely is it that people with dementia will receive the personal assistance necessary to enable them to live with dignity in the community and remain socially included?
• How do nursing homes promote their residents’ autonomy rights and quality of life? For example are residents with dementia allowed access to outdoor areas and are they offered choice in relation to meaningful activities?
• How can human rights principles build on elements of person-centered care and what action can health service professionals and care staff take, if aware of human rights breaches in their everyday practice?
• How many people with dementia are simply drugged into submission in nursing homes, since staff resident ratios are inadequate, skill-mix is poor and training in non-pharmacological interventions is non-existent.
• How can the privacy rights of a cognitively disabled person be maintained in large-scale nursing homes when bedrooms are shared and cramped and no quiet room is available for visitors?
• Should a person with dementia lose the right to make decisions about important matters affecting their life and if so what criteria should be used to support some type of limitation on decision-making?

These important questions are discussed in Professor Cahill’s pioneering new book which is particularly timely and relevant to Ireland given that the country has only very recently ratified the UN Convention, meaning that the country has entered into an international agreement to convert its principles into both policy and practice.   Within Government a focal point for the implementation of the Articles in the UN Convention (of which disabled peoples’ organisations including the Alzheimer Society must be members) now needs to be established.

About dementia

The challenge of Alzheimer’s disease and the related dementias is enormous and its impact is far reaching. Globally about 47 million people are said to have dementia and in the absence of a cure, this figure is set to triple by 2050. In Ireland, current estimates of the prevalence of dementia are set at 55,000, with the numbers of Irish people with dementia expected to reach circa 158,000 by 2046. Like in other countries, in Ireland by far the majority of people who have dementia are women (63%), most of whom live at home in the community and are supported by family members (informal carers) and by health and social care policy.