Too often, older people with dementia in care homes find that their companionship and intimacy needs are frowned upon or ignored.
That’s where a new 30-page guide sponsored by the U.K. Department of Health comes in. The Last Taboo: A Guide to Dementia, Sexuality, Intimacy and Sexual Behaviour in Care Homes provides care home workers and managers with information and practical advice on this sensitive and complex issue.
This accessible document was written by senior researcher Sally-Marie Bamford and published by the International Longevity Centre U.K.
The guide uses a person-centred approach to dementia care, which stresses the dignity and individuality of each person. There are no hard and fast rules. Each case must be viewed on an individual basis.
Mapping the territory
The Last Taboo begins with a quick tour of the dementia landscape, mapping the types of dementia, identifying common symptoms and describing the progressive nature of the disease.
The opening section of the report focuses on how care homes can facilitate relationships for people with dementia. Residents may simply wish to express their sexuality through cuddling or kissing, or through all activities linked to an intimate relationship. The document offers guidance for both pre-existing and new relationships.
- examines possible changes to a relationship when an individual has dementia;
- explores role of the care home in supporting relationships; and
- presents three best-practice case studies provided by care homes.
Relationships that blossom in long term care residences can sometimes cause concern for the staff and often families and friends.
New relationships are assessed:
- on an individual basis;
- by the nature of the relationship;
- on whether the person with dementia is able to make decisions about their life;
- and, according to the Mental Capacity Act 2005, where one or both parties are deemed not to have the capacity to consent to sexual activity.
- provides questions to help determine capacity and risk to the individual; and
- presents five best-practice case studies.
Individual sexual behaviour
According to the research, inappropriate sexual behaviour is not particularly common in people with dementia. Studies also indicate staff, residents and family often disagree on what is meant by appropriate or inappropriate behaviour.
This section of the report lays out the various types of sexual behaviour, and offers tips on how to deal with challenging situations.
Inappropriate sexual behaviours:
- verbal behaviours such as sexualized comments;
- physical behaviour limited to self such as masturbating or exposing genital areas;
- physical behaviour linked to others such as attempting intercourse or oral sex with a staff member.
- offers strategies to deal with inappropriate behaviour;
- provides follow-up questions for reflection; and
- presents two best-practice case studies.
Older people from the LGBT community
The transition from living in their home to a residential care setting can be especially difficult for members of the Lesbian, Gay, Bisexual and Transgender (LGBT) community. For one thing, older members of the community may have kept this aspect of their life private. They may be uncertain or afraid of "coming out" either for the first time or yet again.
Research suggests the LGBT community is fearful of the attitudes and potential prejudice of staff, other residents and their family.
To help elevate these concerns, the guide suggests that care home managers:
- foster an open environment; and
- ensure inclusive policies.
And importantly, the report calls for all care home managers to receive equality training to familiarize themselves with the experiences and possible problems facing older adults from the LGBT community.
Older people who are embarking on a new relationship are at risk of contracting sexually transmitted diseases, and they need to practise safe sex.
The guide suggests care homes ensure:
- that safe sex information is available; and
- residents have access to health care professionals to discuss their concerns.
The closing section of the report offers practical tips for developing policy in key areas:
- the care home environment;
- support and training for workers; and
- policies and practice, particularly in relation to the Mental Capacity Act 2005.
The guide ends with a short quiz and a comprehensive list of resources.
The Last Taboo delivers high-calibre information in a respectful manner, and it challenges negative attitudes about older adults with dementia and their sexuality.
As Alistair Burns, professor of old age psychiatry (University of Manchester) and National Clinical Director for Dementia in England writes: "It is an immensely valuable document which deals with this most sensitive of issues in a clear and open way. It shines a light on this hitherto hidden aspect of dementia care, underscoring the needs of people with dementia in this most personal of areas."