Unit 3: Supporting sexuality, intimacy and relationships in dementia

Dementia and Intimate Relationships

Our sexuality and the expression of that sexuality is an integral part of our daily living experience. We all need to feel loved, and this is no less true for people with a dementia. Togetherness, sexual pleasure and intimacy are strongly associated with life satisfaction (3)Roelofs TSM, Luijkx KG, Embregts PJCM. Love, Intimacy and Sexuality in Residential Dementia Care: A Client Perspective. Clinical Gerontologist. 2021;44(3):288-98..

Dementia greatly affects relationships, and couple relationships especially where roles are significantly changed (4)Sandberg LJ. Too late for love? Sexuality and intimacy in heterosexual couples living with an Alzheimer’s disease diagnosis. Sexual and Relationship Therapy. 2023;38(1):118-39.. As people with dementia experience changes in cognition and judgement, the expression of their sexuality may result in changes in behaviour that sometimes people who care for them don’t know how best to respond to. The desire for love is still present, the physical and emotional changes may affect how they feel about sex and intimate relationships. See Alzheimer’s Society factsheet on sex and intimate relationships.

Many people living with dementia, including younger persons living with dementia describe that their partner does not always understand the dementia-related changes, leading to conflicts and feelings of anger and frustration, possibly also disrupting sexual desire in persons living with dementia (4)Sandberg LJ. Too late for love? Sexuality and intimacy in heterosexual couples living with an Alzheimer’s disease diagnosis. Sexual and Relationship Therapy. 2023;38(1):118-39..

Intimacy isn’t just about sex. As carers we need to examine our attitudes and be comfortable in initiating these important conversations.

Early discussions about the importance of sexual and intimate relationships will enable staff to see the perspective of the person living with dementia. This will be helpful at a point in time when they may not be able to effectively communicate their needs. It is important to ensure that the person living with dementia and their partner know they can have these conversations with healthcare staff and they can be revisited if the time is not right. The ability to start and maintain these conversations is a skill that staff should develop as clients can pick up the unease of staff who are reluctant or feel ill equipped to support the conversations.

There is a mistaken belief that cognitive impairment erodes all capacity for decision-making and intentional self-expression (Grigorovich et al 2020) (5)Grigorovich A, Kontos P, Heesters A, Martin LS, Gray J, Tamblyn Watts L. Dementia and sexuality in long-term care: Incompatible bedfellows? Dementia. 2022;21(4):1077-97..

When people living with dementia begin to make decisions that appear, from the family's and carers perspective, to not be in keeping with their previous lives, then the capacity to make these decisions needs to be considered.

Mental Capacity

The assessment of capacity to make decisions is governed by the Mental Capacity Act in the UK. Each of the devolved nations has its own legislation but the key principle is that everyone is presumed to have capacity unless they have a formal mental capacity assessment that indicates they don't have the capacity to make a decision. However, the capacity to make a decision in one area of a person's life doesn’t mean they are able to make decisions in other areas of their lives.

The five principles of mental capacity:

• Capacity to make a decision is presumed
• Ability to understand the issues surrounding the decision
• Ability to retain the relevant information related to the decision
• Understanding how the decision is relevant to them
• Ability to communicate decisions and this may be in other forms, not only verbal

Consent And Capacity

Balancing an individual’s liberty while being mindful of legal implications can create tensions for staff. Respecting wishes for intimacy, assessing risk and supporting personal freedoms, privacy and choice, especially when there are concerns about mental capacity, can be challenging for staff (6)Dickinson t, Litvin,R., Horne,M., Brown Wilson, C., Simpson,P. and Hinchliff,S. Sexuality and Relationships in Later life  In: Ross FM, Harris R, Fitzpatrick JM, Abley C, editors. Redfern's nursing older people 5th ed. Glasgow: Elsevier Health Sciences; 2023..

The capacity of a person with dementia to consent to sexual intimacy is central to all discussions of sexuality. Every effort must be made to prevent abuse, and responses to harm must be immediate, following legal and organisational frameworks.

Useful Resource: Royal College of Nursing - Older People in Care Homes: Sex, Sexuality and Intimate Relationships.

In this animation two characters James and Beth have chosen to have an intimate relationship while living with dementia. Both have been assessed to have capacity to make this decision. This story highlights the unique challenges that arise: How do we as health and social care workers honour their freedom to form new connections while ensuring a supportive and safe environment? How do we respect their privacy in a communal setting? The story also sheds light on family tensions and fears arising from perceptions that a diagnosis of dementia automatically strips away the capacity for intentional choices.

This resource starts and finishes from the premise that sexual relationships are an important part of life, and everybody has the right to intimate and sexual relationships if they choose. Many people living with dementia do have the capacity to consent to sexual and / or intimate relationships and in this case, their privacy needs to be respected. Where families are involved, they also need support to respect the rights of their family member living with dementia to make these decisions. Even when they may not have been decisions that would have been made in the past, as long as the person has the capacity to make the decision. There is also the need for a member of staff to have a supportive conversation to identify if capacity fluctuates and is likely to impact on the person's ability to consent to the relationship.

Removing Stigmas

It is vital that we remove the stigma of sexualised behaviours so that we are able to respond effectively and supportively to people living with dementia who may be expressing their sexual needs. This behaviour may also be expressing another unmet need e.g. someone who removes their clothing in a public place. It may be that the clothing is too hot or tight, an itch from a washing detergent or an infection. Often, people living with dementia may not fully understand or be able to respond to the social requirements of the environment. They also may not be able to inhibit some of their responses, which may result in impulsive behaviour that staff or others may find uncomfortable (7)Wilson CB. Caring for people with dementia: a shared approach. London: Sage Publishing; 2017.. The person with dementia may also be responding to an unmet need for intimacy. Unmet needs may often result in a range of behaviours that are communicating something such as physical illness feeling hot, cold or hungry, being in pain or experiencing emotional distress. Changes in behavior may also be a sign that the dementia is progressing that may require changes to care. This can be distressing for care givers, families and when in residential environments, for other residents (7)Wilson CB. Caring for people with dementia: a shared approach. London: Sage Publishing; 2017..

In this animation we meet John living with dementia at home being cared for by his family and supported by health and social care staff. The animation highlights the difficulties in determining what is inappropriate behaviour, what is a progression of dementia or confusion related to place and people. Exploring how to support staff so they feel safe and empowered while central to finding solutions, this animation also highlights the difficulties experienced by families when people living with dementia behave in a way that seems alien to them.

Practical Tips: Frances and Orla discuss the impact of mislabelling ‘inappropriate behaviour’ on a person’s care journey and offer some practical tips on how to support people in both acute and long term settings to meet their needs for intimacy, express their sexuality and maintain their intimate relationships.

Understanding Behaviours

The challenges for health and social care workers in navigating their own personal boundaries in relation to intimate and sexual expressions from residents cannot be underestimated. How these situations are handled is important, to avoid having a negative impact on the care relationship. Sexualised behaviours towards care workers must be assessed and understood, so that steps can be taken to intervene and cease this from happening as soon as possible. Reacting negatively towards the person for their actions may create tensions and a negative care environment, particularly as the person may not understand that they have done anything wrong. Adopting a person-centered care approach would see the care worker calmly redirecting a person’s sexual approach, protecting the person’s dignity and/or using distraction techniques and assessing if there is an unmet need.

Bilha highlights the importance of empathy informing communication to ensure that as carers we do not heighten distress of patients with dementia in the hospital environment.

Colleagues in the Netherlands have developed a scale to identify how confident nurses feel when dealing with intimate and sexual behaviour in clients with dementia. It is called Including Personal Boundaries Scale (IPB). Nine statements are measured using a six point Likert scale from completely untrue to completely true which may be helpful for nurses to self-assess to balance personal and residents’ needs (8)Waterschoot K, Roelofs TS, van Dam A, Luijkx KG. Including personal boundaries scale: development and psychometric properties of a measurement for nurses' self-efficacy toward intimate and sexual behavior in dementia care. Frontiers in Dementia. 2024;3:1304438..

Having early conversations about sexuality and intimacy with people living with dementia within the care system and adopting a life story approach provides opportunities to support not only residents and their families but also staff in proactively addressing sexual and intimacy needs.

‘Not all behaviour that looks like a sexualised behaviour is a sexualised behaviour.’ – Frances suggests we look to the person in their environment for cues.

Biopsychosocial Approach
A biopsychosocial approach to understanding the person with dementia examines the psychological and social factors of a medical condition, in addition to the biological factors (Resources: Spector, A. and Orrell, M., 2010. Using a biopsychosocial model of dementia as a tool to guide clinical practice. International Psychogeriatrics, 22(6), pp.957-965.)

6D-Dementia has been developed by Dr. Frances Duffy specifically looking at the whole person with dementia, in the context of their environment and also the impact of the people around them and those who support and care.

The 6D approach is based on the principle that all behaviours are driven by our needs, together with our understanding of the situation. This means that how we behave in a particular situation is determined by a number of factors. This is true for everyone, with or without a dementia.

These factors include:

• Physical wellbeing – e.g., does the person have an infection?
• Life story – e.g., how did the person live their life?
• Environment – e.g., is there opportunity for privacy?
• Activity – e.g., does the person have access to a range of activities they enjoy?
• Safety – e.g., does the person feel safe in their environment and relationships?
• Emotional wellbeing – e.g., is the person experiencing low mood or anxiety?

Overarching these factors is:

• Cognition – e.g., the person’s ability to communicate their thoughts, feelings and needs, their understanding of the environment, the behaviour of others, and how their own behaviour impacts on others.

When we consider all of these factors, not just cognition, we can see the whole person and offer support in ways that meets their individual needs.

This approach can be used to understand any behaviour, including sexualised behaviour. For example:

• Is the person touching their genitals because there is a physical health condition causing discomfort?
• Does the person have little opportunity for activity, and sexual behaviour relieves provides stimulation and occupation in an otherwise monotonous day?
• Has the person misinterpreted the relationship, and believes they have an intimate relationship with a carer?
• Does the behaviour or language of a carer increase confusion, for example, using terms like “love”, “pet” or “sweetheart” during support with personal care?
• Has the person misidentified another person as their husband/wife?
• Does the person not recognise that they are in a public area when they have a desire to engage in sexual behaviour?

Some behaviours may be misinterpreted as inappropriate sexual behaviour, when in fact the intention of the person with dementia is very different, and not sexual in nature. This is why it is so important to see the person beyond the label.

The influence of the organisation
An organisation's philosophies frame the way older people's sexuality is perceived. Organisational systems can make explicit the boundaries contained in policies, which promote safe practice and protect both residents and staff. Negotiating these in everyday practice requires judgment, skill and full support from senior staff (9)Bauer M, Fetherstonhaugh D, Tarzia L, Nay R, Beattie E. Supporting residents’ expression of sexuality: the initial construction of a sexuality assessment tool for residential aged care facilities. BMC geriatrics. 2014;14:1-6..

Noma highlights the importance of organisations recognising diversity within their workforce and empowering person-centred dementia care through culturally inclusive training for health and social care staff.

Sexuality in long term care facilities is often managed in an ad-hoc way, without relying on explicit and previously agreed institutional policies, which leads to uncertainty among both professionals and residents (10)Villar F, Serrat R, Celdrán M, Fabà J, Martínez T, Twisk J. ‘I do it my way’: long-term care staff’s perceptions of residents’ sexual needs and suggestions for improvement in their management. European Journal of Ageing. 2020;17(2):197-205..

Colleagues in Australia designed an assessment tool to identify the relevant areas related to sexual and intimate relationships for people living with and without dementia in care homes This is called the SexAT – organisational assessment tool and a copy is available in the resource section (11)Bauer M, Fetherstonhaugh D, Nay R, Tarzia L, Beattie E. Sexuality Assessment Tool (SexAT) for residential aged care facilities. Available from the Australian Centre for Evidence Based Aged Care, La Trobe University, Melbourne VIC. 2013;3086:3..

We have adapted some of the questions in the tool to consider the person living with dementia in more detail below:

Unit 3 Quiz

Please answer the following questions to show how much you have learned from Unit 3: