Study on Sexuality in People Living with Dementia (PLWD).
Research type
Research Study
Full title
Dementia, Sexuality and the Law- Is the Law striking the right balance?
IRAS ID
314689
Contact name
Oluwatoyin. A Sorinmade
Contact email
Sponsor organisation
Kent and Medway NHS and Social Care Partnership Trust
Duration of Study in the UK
0 years, 6 months, 1 days
Research summary
Summary of Research
English law says that individuals having sexual relations must give “here and now” permission to engage in such relations. Sexual relations include kissing, cuddling and sex etc.This means that when people with dementia (PLWD) lose the ability to give “here and now permission” to sexual relations, they cannot legally engage in such relations as no one else can give permission on their behalf.
Developing dementia does not mean that the individual will immediately lose the ability to make decisions about sexual relations, but PLWD especially those in care homes, are usually dissuaded from sexual relations through different means to “keep them safe”.
After the diagnosis of dementia, it is important for the PLWD to live well with this disease and engage in everyday activities and relationships where possible.
Research tell us that what is most important to PLWD is for them to be seen as equal to others and given equal opportunity to continue to engage in relationships, including intimate relationships, as it is their human right to do so.
Research also suggests that only 28% of intimacy seeking behavior by PLWD is driven by behavioral difficulties associated with dementia.
It's not often acknowledged how barring PLWD from having sexual relationships affects them, and little is known about their sexual and personal expression preferences in diverse situations.
This study aims to give a voice to older people, PLWD and their partners as well as carers, to help us understand their thoughts about whether the law as it stands has the balance right between protecting people with dementia and supporting them to express their sexual desires.
This study will help us understand their thoughts about what they would like to change (if anything) in the balance that the law strikes.
Summary of Results
1. Details of Researcher as well as the Funding and Sponsorship Arrangements
This research study was carried out by Dr Oluwatoyin Sorinmade, Consultant in Old Age Psychiatry, Kent and Medway NHS and Social Care Partnership Trust.
The study was funded by the National Institute for Health and Care Research Applied Research Collaboration Kent, Surrey and Sussex; through the Individual Development Awards (Springboard) scheme.
The study was sponsored by the Kent and Medway NHS and Social Care Partnership Trust.2. Study Location, why the research was needed and the main question studied
The study was carried out in Kent in England.
The law in England and Wales protects us all from sexual abuse and exploitation by requiring “here and now consent” to sexual activity.
The requirement for “here and now consent” means that in the eyes of the law, People Living with Dementia, who no longer have the ability to give here and now consent” (permission) to intimacy should no longer engage in such sexual relations e.g. kissing, cuddling, and up to sexual intercourse itself.
These individuals are thus dissuaded from sexual relations, especially in care homes, due to what the law says.
What research however tells us is that individuals with dementia (even in severe stages of dementia), are still able to differentiate between pleasant and unpleasant experiences and research also suggests that only a third of intimacy seeking behaviour by People Living with Dementia is due to behavioural difficulties associated with dementia.
The effects of dissuading People Living with Dementia from sexual relations due to their inability to give “here and now” permission to such relations is poorly understood and unaddressed. This is due to the sensitivity of this topic, despite its implications on their quality of life and the quality of life of their loved ones.
This study was thus designed to provide a deeper understanding of the importance of sexual relations to older People Living with Dementia as well as the consequences of current laws on such individuals, when they are dissuaded from sexual relations due to their inability to give “here and now” permission to such relations.
The study was designed so we could examine this sensitive but under-researched area and give voice to (a). People Living with Dementia (b). their partners/unpaid carers as well as (c). paid carers in care homes and (d). people over 55 years of age, as well as (e). experts in the care of People Living with Dementia, on this topic.
The study was designed in the hope that what we find will safely, influence policies that govern the care of individuals with dementia, improve their care and optimize their quality of life on issues relating to sexual relations.3. Who Participated in the Study:
Our study group consisted (i). People Living with Dementia (ii). Unpaid carers of People Living with Dementia (iii). Paid carers of People Living with Dementia (iv). People over 55 years without dementia (v). Professionals with expertise in the care of People Living with Dementia.
We were able to recruit a total of 35 participants- (i). People Living with Dementia (n=3), (ii). Unpaid carers (n= 4), (iii). Paid carers (n=8), (iv). People over 55 without Dementia (n=6), and (v). Professionals in the care of People Living with Dementia (n=14).4. Definition:
We defined sexual relations to include kissing, cuddling and up to sexual intercourse.5a. What happened during the study:
We explored the thoughts of all participants on:
i) The issue of sexuality in Dementia
ii) If they think that People Living with Dementia, who have lost the mental capacity to make decisions on sexual relations, should be stopped from engaging in such relations.
iii) We also had specific questions for (i). Unpaid carers of People Living with Dementia (ii). Paid carers of People Living with Dementia (iii). People over 55 years without dementia (iv). Professionals with expertise in the care of People Living with Dementia on:
iv) What they think about the law as it stands i.e. if the law has the right balance between protecting People Living with Dementia and supporting them to express their sexuality/have intimacy needs met.
v) What (if anything) they would like to see changed in the law
vi) We explored possible changes in the law, regarding the scope of powers available to the (a). Health and Welfare Lasting Power of Attorney as well as (b). the Court of Protection i.e. to empower them to be able to make Best Interests decisions on sexual relations, on behalf of People Living with Dementia who have lost the mental capacity to make such decisions;
vii) We explored the Advance Decision on Intimacy concept i.e. what the participants thought about the hypothetical situation where individuals might be able to say in advance how they would like to be treated regarding sexual relations, if they lose the ability to give ‘here and now’ consent (permission) to sexual relations in future.5b. Study participants were provided with:
(i). Fact sheet on Sex, Intimacy and dementia as published by the Alzheimers Society.
(ii). Further information on legal considerations regarding consent to sexual activity, including the position of the laws that protect us from sexual abuse and exploitation amongst others, by demanding that we must all give “here and now” consent to engage in sexual relations.
(iii). Participant Information Sheet to explain the reason for the study as well as information on moral considerations relating to the study, amongst others.6. What were the Results of the Study:
The main themes that emerged from the opinions gathered include:
(i) This is a complex topic morally, and legally but this topic needs to be studied;
(ii) There are gaps in public and professional knowledge on legal issues relating to dementia and the Laws on giving consent (permission) to sexual relations, as well as how these relate to the issue of sexual relations in dementia;
(iii) It is common for People Living with Dementia as well as their partners to seek sexual relations, and there are physical and psychological adverse effects on the respective individuals when they are denied;
(iv) The Law should be reviewed due to its blanket effect and failure to consider nuances of individual situations i.e. possibility for the Law to consider the unique circumstances of each case;
(v) Intimacy seeking behaviour by a Person Living with Dementia might be driven by dementia or its associated symptoms, and this might put them at risk;
(vi) In People Living with Dementia the desire for intimacy may be due to basic human instincts and needs, such as the need for comfort, companionship, physical contact, and the relief of loneliness;
(vii) Where intimacy seeking behaviour puts a person living with dementia at risk, they must be protected from abuse/exploitation or whatever the risk is;
(viii) Cautious support for an individual to be able to make Advance Decision on Intimacy as long as there are plenty of safety measures in place to protect them from abuse and exploitation and degrading treatment- i.e. that the Advance Decision on Intimacy should not expose the individual to abuse or exploitation;
(ix) Very limited support for the delegation of powers to children to make decisions on sexual relations on behalf of their parent, living with dementia, who has lost the ability to make decisions on sexual relations;
(x) Limited support for the Health and Welfare Lasting Power of Attorney or for the Court of Protection to be given powers to make Best Interests decisions on behalf of People Living with Dementia who have lost the mental capacity to make decisions regarding sexual relations.
(xi) The views of the partners of People Living with Dementia, should be considered during discussion on this issue.7. How has this study helped patients and researchers?
The study has shown the need for a shift in attitudes on the part of the general public and all stakeholders involved in the care of People Living with Dementia, especially in the advanced stages, to recognise that person-centered care for individuals living with dementia should include the recognition of their intimacy needs as well as the intimacy needs of their partners.
This shift of attitude must however ensure that People Living with Dementia must remain safe and free from exploitation or abuse whilst also optimising their Quality of Life and whilst enabling them to live well with dementia.
The anticipation is that the above study findings will influence policies that govern the care of individuals with dementia to improve their care and quality of life – i.e. to add life to their years.
The anticipation is that the understanding derived from the above study will promote further research in this area.8. Details of further Research Planned
(a) Study on what people think about a "Hybrid Model," which combines Advance Decision on Intimacy with explicit safeguarding provisions.
• The study will explore what: (i). People Living with Dementia (ii). Unpaid carers of People Living with Dementia (iii). Paid carers of People Living with Dementia (iv). People over 55 years without dementia (v). Professionals with expertise in the care of People Living with Dementia, would want an Advance Decision on Intimacy to contain.
• The study will also explore what safety measures the participants will want to be in place, to ensure that the Advance Decision on Intimacy does not put People Living with Dementia at risk of abuse, exploitation, or other negative outcomes when it is put into action.
(b) Study on the impact of being dissuaded from sexual relations on People Living with Dementia who have lost the ability to give consent (permission) to such relations. The study will also explore the impact of being dissuaded from sexual relations, on the partners of these individuals.9. Where can I learn more about this study?
You can contact the Chief Investigator of this study, Dr Oluwatoyin Sorinmade, on Oluwatoyin.sorinmade@nhsnetREC name
Wales REC 2
REC reference
22/WA/0211
Date of REC Opinion
8 Sep 2022
REC opinion
Further Information Favourable Opinion