Last reviewed 5 December 2017

Dementia shares with other disorders the stigma and discrimination that attach to all forms of mental illness, writes Jef Smith.

It has the additional dimension of being predominantly a condition experienced by the elderly, another often disadvantaged group. Its effect on individuals is to rob them progressively of qualities essential to them as personalities, creating a unique sense of fear and disorientation. Crucially, it progressively deprives them too of the ability to communicate, at least in ways which people close to them find meaningful or acceptable, and with that they lose the power to fight back or to justify themselves.

Even discussing and describing dementia provokes dissent about the discrimination inherent in some of the language used. Many authorities argue, for example, that speaking of dementia “sufferers”, however real is the suffering the disease trails in its tracks, is to put unhelpful distance between people with dementia and the rest of us and to disempower them even further. Similarly, the ways those close to people with dementia have sometimes expressed their loss — “he’s no longer the husband I married”, “the person I knew has simply gone away”, “she’s no more than a shell of what she once was” — come painfully close to denying personhood itself.

Alzheimer’s Society advice

In its 2017 statement Equality, Discrimination and Human Rights, the Alzheimer’s Society addressed these issues frontally. It adopted a “rights-based approach” and urged that care and support should be “based on individual need, rather than assumptions about the condition”. It identified three key sources of discrimination — ageism, the stigma associated with the condition, and the lack of capacity to challenge.

This way of seeing mirrors that of the Equality Act 2010, which makes it illegal for people to be treated less favourably because of a range of conditions including disability. The Act, however, permits acts of discrimination which have positive consequences such as flu vaccinations, subsidised travel, and other services and concessions specific to older people. This important exemption allows, indeed encourages, professionals, for example to adjust decision-making and feedback arrangements in ways which makes them more accessible to people who have communication difficulties. There is a direct comparison with the EasyRead versions of documents now routinely produced by official bodies so that even people with learning disabilities can access their messages.

In policy terms, these principles lay the groundwork for several lines of action. They include improved early diagnosis rates and procedures, challenges to discrimination on grounds of age — ironically younger people with dementia often suffer from the disease’s being predominantly associated with old age — action to tackle abuse including the inappropriate prescribing of antipsychotic drugs, farer funding and, of course, higher standards of care generally. If action were taken on all of these fronts, the poorer deal which people with dementia characteristically experience would be substantially improved.

Skills for Care guidance

Turning high-level principles into day-to-day practice has never been easy, but in 2017 Skills for Care added an additional document to their already formidable set of resources on dementia with the publication of Dementia and Diversity: A Guide for Leaders and Managers. This is aimed at “teams working with people living with dementia who are from a diverse range of cultures and backgrounds” and the aim is to sensitise practitioners to the added dimension of discrimination which is often experienced by people from minority cultures.

The focus is particularly on people from black, Asian and other minority ethnic backgrounds (BAME) and people who are lesbian, gay, bisexual or transgender (LGBT). Not every home will currently include residents from any of these groups, but demographic developments mean that they might well have some soon and should certainly be prepared for that eventuality.

Currently, 14% of the population are non-white; in some areas of course the figure is much higher. Sexual orientation is more difficult to measure because many people are reluctant to declare; the best estimate from the 2014 Integrated Household survey is that nearly 93% identify as heterosexual. The remaining 7% is almost certainly a low estimate and variations in sexuality are distributed widely across the country. Whereas a care home or agency will presumably know if it has ethnic minority service users, a service user from a sexual minority group may not, immediately or ever, self-disclose.

As with all social care practice, personalisation is central, but in work with people with dementia, the process of finding out what a person needs or wants will often be distorted by their difficulty in communicating. A person’s culture and background forms a fundamental part of their identity, but accessing that background may require of staff the development of particularly strong relationships with clients’ family and friends. It is such human contacts which can fill out the resident’s life history and provide the information on their likes and dislikes which is fundamental to personalising their care. The usual warning needs to be inserted that even loved ones have a different perspective from that of the person themselves; there is no complete alternative to listening to the individual, however, difficult that process may be.

Additional factors

The Skills for Care guidance lists some of the additional factors of which staff need to be aware in working with BAME residents. These include possible reversion to a primary language, regression to an earlier time when they lived in a different country or culture, a particular vulnerability to the disease’s stigma, a reluctance to access sources of official help perhaps arising from previous experience of discrimination, and a sensitivity to the relevance of specific events and festivals. Beware generalisations, there are minorities within minorities, which compounds complexity.

The additional factors which workers need to bear in mind in work with LGBT people are different again. Compared with heterosexual people, LGBT people are, for example, quite likely to be single and to have lived on their own. They are much less likely to have children and tend to have less regular contact with their families, which means that they probably need to rely more heavily on care services when in need. Ironically they often feel that staff providing services will lack knowledge or sensitivity and they may feel out of place in traditional support groups, so staff need to be particularly careful not to make comments which might be interpreted as homophobic. Then of course, given the stigma and the risk of discrimination, there are those people who have not previously identified as being LGBT, for whom coming out late in life may itself be an ordeal.

A competent workforce

From a management perspective having a workforce competent to work with people from these minorities starts with sound recruitment practice. Skills for Care has a range of guidance on finding and keeping workers, and this document adds some specific tips for looking for staff in this particularly sensitive area. It covers advertising, particularly some of the pitfalls to be avoided in drawing up adverts and job descriptions. Mentioning a particular ethnic group or age category, for example, could be in itself discriminatory. Including the fact that candidates from under-represented groups are welcome so that your workforce matches the profile of your community — the process known as positive action — is, however, permitted, indeed to be encouraged. For the organisation to have a clear equality and diversity policy and to make this available to job applicants is, of course, important. Employment law, Skills for Care points out, is complex, so if in doubt seek advice.

The document goes on to consider in similar detail induction, support for cultural and background awareness, and continuing staff development. Sections are supported by case studies of good practice and scenarios which challenge the reader to consider how they would react to real life situations. Managers should not neglect their own development; these are fields in which both the available knowledge is growing and public and political attitudes are still evolving, so change is sure to happen. Good leaders keep ahead of the curve.

Reassuringly, the Alzheimer’s Society and the Skills for Care publications end with strikingly similar summaries. The key lessons for those working with people who both have dementia and are at risk of discrimination for other reasons are pretty obvious in retrospect, but they bear restating. Study your residents’ background, culture, beliefs and preferences. Recruit staff with sound values and cultural awareness. Provide ongoing training, development and support for front-line workers, supervisors and managers. Show commitment from the top of the organisation. You are not alone, so don’t be afraid to look out for the wealth of available resources, and if you feel unsure seek help.