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Relationships, sexuality and dementia

senior couple holding hands

Everyone wants to feel loved. This is no less true for people with a dementia and their partners. Being able to express one’s sexuality in a safe and rewarding way contributes much to an individual’s overall sense of emotional and physical well-being.

The onset of dementia does not necessarily mean an end to sexual needs or need for sexual expression. However, the changes brought about by dementia can lead to social, emotional and behavioural challenges for the individuals concerned and can create ethical and safeguarding issues for staff.

It is recognised that one’s sexuality and sexual expression is a highly sensitive, personal matter for most people.

To support staff deal with these issues, a new guide has been developed by the Health and Social Care Board, in collaboration with HSC Trusts, academics, experts in sexual health, community and voluntary representatives and people with a dementia and their carers.

The Operational Guide for Staff on Relationships, Sexuality and Dementia aims to provide practical support to staff so they can enable, empower and support others.

Seamus McErlean, Social Care Commissioning Lead,  HSCB said:  “Caring for a person with a dementia, their partners, carers and families is becoming one of the greatest challenges to our health and social care system.

“Until fairly recently however, the right or the need for an individual with a dementia or their partner to enjoy sexual experiences and to express their sexuality was little recognised either in the research literature or in care practice.

“This may be due to the discomfort that the individual and staff felt in discussing intimate personal issues and might also have been a reflection of a societal bias which values youth, beauty and productiveness.

“Everyone has the right to live fulfilled and meaningful lives, free from abuse or exploitation and this includes the right of people with a dementia to express their sexuality in a safe and non-judgemental way,” he said.

Sandra Aitcheson, Assistant Director Nursing at the Public Health Agency said: “Developing or maintaining a sexual relationship can be an enriching experience and it is important to remember that a person with a dementia has the same rights and needs as anyone else. However, it is also important to understand that dementia brings about changes to the brain which can result in changes in feelings and behaviours. This may include changes in sexual behaviour and intimate relationships.

“This guide is for everyone regardless of their gender or sexual orientation and seeks to endorse the idea that expressing one’s sexuality in a safe and legal way is a means of validating one’s identity as a human being. It will support staff in discussing this with individuals, their partners, families and carers.”

The Guide includes a number of stories, all of which have been adapted from research or from examples from staff.

Each story has a section entitled ‘Discussion / Learning Points’ which include statements and / or questions which should be used by staff and trainers to facilitate reflective practice and understanding about the issues and promote learning.

It is hoped that the Guide will facilitate discussion about this important aspect of people’s lives and promote better understanding of their needs. As awareness, knowledge and understanding increases, it is hoped that staff will be more confident to deal with this issue and that people with a dementia, their partners, families and carers will benefit from receiving a more person-centred and supportive service.

Funding has been made available by the Health and Social Care Board to promote awareness and provide training to staff based on the material contained in the new Guide.

View the Operational Guide