Caring for Dad, from near and afar – Simon’s story
Simon, who has lived in New Zealand for two decades, discusses how he cares for his dad who has Alzheimer’s disease and lives alone in the UK.
When someone lives with dementia, it may change their sexual relationship with their partner and the ways in which they are intimate with each other.
This can be a difficult subject to discuss with your partner or other people, including professionals, but being open about how things are changing may help you continue to enjoy an intimate and/or sexual relationship despite the dementia diagnosis.
Intimacy is not just sexual activity – it can take many different forms, including:
- Sex
- Kissing
- Touching
- Massage
- Cuddling
- Spending time relaxing together
- Taking part in activities together
- Reminiscing about shared history
- Simply being with each other and laughing together
It is important to remember that intimacy is different for each couple.
As a person’s dementia progresses, their relationships with others may change. For example:
- One person may have more interest in having a sexual relationship than the other
- The person living with dementia may be unable to recognise and acknowledge previous and/or existing relationships
- The person may start to find it difficult to recognise their partner and how they are connected
- The person with dementia may transfer their affection to another person, such as a family member, friend or carer
These changes can be very upsetting to the person with dementia and their partner and put a strain on their relationship.
If your partner has an increased interest in sexual activity and it is proving hard to meet this need, it is important to find a balance that works for both of you.
For example, you could explore different ways of being intimate such as a massage or cuddle.
If your partner is less interested in sex and intimacy, it is equally important that you respect this decision.
If the changes in your sexual relationship and intimacy are causing concern or distress, it could be helpful to talk it through with someone you can trust, such as a dementia specialist Admiral Nurse – see Sources of support, below, for details.
With support, you may be able to find ways to meet both partners’ needs.
It is important that consent is given prior to any sexual activity taking place – but as a person’s dementia progresses, they may become less able to consent.
Consent can take many forms and may be non-verbal. For example, if the person with dementia responds positively with obvious enjoyment when their partner makes sexual advances, they are likely to be consenting to sex.
Alternatively, if their level of response, enjoyment or willingness diminishes, this could indicate that they don’t consent to sex, and this must be respected.
It is important to remember that consent can fluctuate. If the person living with dementia consents to intimacy on one occasion, it does not mean they will consent the next, and vice versa.
In some cases, people with dementia experience heightened sexual desire.
This can cause difficulties, particularly if their partner does not want to participate in sexual activity and the person with dementia does not understand or accept this.
If this happens, it is a good idea to discuss it with a professional, as it is as important that both partners consent to any sexual activity that takes place.
To speak to a dementia specialist Admiral Nurse about sex and intimacy or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email helpline@dementiauk.org or you can pre-book a phone or video call with an Admiral Nurse.
Book an appointment with an Admiral Nurse
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.
