How do you navigate intimacy with dementia?

How does dementia impact a person’s ability and desire for intimacy? Can people with dementia give consent? In this article we explore these topics and provide practical advice for couples.  

If you live with dementia or are in a relationship with a person that does, we are here to help. Call us any time on 1800 100 500. We are available 24 hours a day, seven days a week, 365 days a year.  

 

How does dementia impact a person’s ability and desire for intimacy? 

People with dementia continue to need loving, safe relationships and many people living with dementia enjoy sex and intimacy in their relationships.  

As dementia is a progressive condition, the way you and your partner choose to share intimacy may change over time. Changes in a person’s brain can directly affect intimacy including decreasing or increasing a person’s libido, inability to understand cues or the inability to respond to them appropriately.  

 

How do you maintain intimacy in a relationship? 

It is important to remember that the need for closeness and connection does not disappear with dementia but may require new and different expression. There are many ways for couples to maintain and engage in intimacy. You could try: 

• creating a date night without any pressure or expectation 

• cooking a meal together or enjoying a favourite food  

• watching a movie or listening to music together with a cuddle on the couch 

• sharing a sunrise or sunset while holding hands. 

As is true with many aspects of dementia, it can be helpful to try and accept the changes and live in the present moment with each other. 

 

Do people living with dementia have the capacity to give consent? 

A diagnosis of dementia doesn’t necessarily mean that a person lacks the capacity to give consent, but their ability to give consent may change over time or even day to day. A person with dementia may be able to consent to some things but not others. For example, they may not be able to consent to financial decisions but may be able to consent to intimacy. 

If there is some doubt about capacity, it is advisable to seek the advice of a medical specialist. If necessary, an assessment may be required to determine the person’s capacity to make informed decisions. Each state and territory has different laws and, in some cases, different terminology about decision-making capacity. For more information about decision-making capacity visit our help sheet: https://www.dementia.org.au/sites/default/files/helpsheets/Helpsheet-YoungerOnsetDementia02-PlanningAhead-DecisionMakingCapacityAndTheLaw_english.pdf 

 

What happens if the partner of a person living with dementia wants to start a new relationship? 

As the caring load increases, partners can feel that their relationship has changed significantly and that it is no longer an equal partnership. Deciding to start a new relationship is a personal choice and a consideration that can sometimes happen when the person living with dementia moves into residential care.  

In many situations where this occurs, the new relationship developed out of a need for comfort and companionship that they were no longer able to receive. Often partners do not abandon their loved one and continue to visit and support the person living with dementia.  

There is the potential to feel a sense of guilt or that the partner is cheating on the person living with dementia. However, continuing to support the person living with dementia in care, alongside developing a relationship to meet the partner's own needs for comfort and intimacy, can be a positive way to maintain wellbeing for both the person living with dementia and their partner. 

 

What happens if the partner wants to end their relationship with a person living with dementia? 

This consideration does arise for some partners as taking on the role of carer is a very demanding one both physically and emotionally. 

Some partners may feel they do not have the health, physical or emotional resources to care for a person living with dementia for an uncertain period.  There may also be historical factors in the relationship that partners consider when deciding to become a carer or stay in a relationship. 

Identifying and acknowledging the partner’s own limits is a very wise approach and supports the wellbeing of both the partner and the person living with dementia. 

Engaging family, friends or professionals in a support network and leaving a relationship is not failing but can be an essential approach for some couples in navigating complexities that can arise after a diagnosis of dementia. 

 

How do you manage inappropriate sexual behaviours? 

As a result of dementia, some people may display what is viewed by others as inappropriate sexual behaviours. It is important to remember that any strange or uncharacteristic behaviour is caused by the condition, and they may no longer know what to do with sexual desire or how to appropriately exercise the desire. 

It is important to consider all the possible reasons for the inappropriate behaviours. This could include needing to go to the toilet, discomfort, boredom or mistaking someone for their partner. You can also find ways to include different forms of touch in the everyday routine so that the person gets some physical contact. Massage, holding hands and embracing are ways of continuing to provide loving touch. 

If you live with dementia or are in a relationship with a person that does, we are here to help. Call us any time on 1800 100 500. We are available 24 hours a day, seven days a week, 365 days a year.  

If you are an aged care worker and would like to access training on this topic, or many others, visit our Centre for Dementia Learning website: https://dementialearning.org.au/ 

 

Want to know more about dementia and relationships? Check out these articles: 

Can aged care residents continue or start new relationships? Aged care residents have the right to access safe and high-quality care and services. But what happens if a resident wants to engage in intimacy and should aged care staff interfere? 

Does dementia impact your libido? When Phil was diagnosed with dementia, he knew things would change but one symptom he didn’t expect was his lack of interest in intimacy. 

Should I stay or should I go? When Vicki’s new husband Michael was diagnosed with dementia, she quickly realised their life together was not going to be the one she had dreamed of.  

Partner, carer or both? We talked to people living with dementia, their partners and a Dementia Australia counsellor to find out if you can still maintain your partnership after a diagnosis of dementia. 

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