From difficulties with intimacy, memory and communication to changing sexual behaviours, dementia will put a strain on even the strongest couples. A diagnosis can bring up issues you might never have anticipated. So can you care for your relationship while caring for your partner?
Understanding intimacy: “People may find that they have lost interest in certain aspects of physical or emotional intimacy after a dementia diagnosis,” says Alzheimer’s Society’s Dr Tim Beanland. “If this happens, trying new hobbies or activities together or dedicating a day to having quality time to reestablish their romantic connection is important.
“Equally, some find their interest in sex increases during the early stages of their illness. If only one partner’s interest in sex or physical intimacy has increased, both partners need to discuss this to find out how what they feel will work for them.
“Carers who have started helping with personal care such as washing, bathing or dealing with incontinence may find it awkward to do this as well as being someone’s sexual partner. They may feel put off the idea of sex as a result, which can be isolating for both people in the relationship, as well as causing feelings of guilt.
“It is important that all activity is consensual and respectful, and that neither partner feel pressured into anything they do not want to.”
Tricky behaviour: “Dementia can affect a person’s personality and habits, which may lead to changes in what they do and say,” says Dr Beanland. “For example, they may no longer be able to do things they used to, which can cause them to be distressed or leave them agitated. They may also have disrupted sleep patterns, which then in turn may impact their partner’s sleep.”
Changes in sexual behaviour also occur in some with dementia. This may include the use of crude language or saying inappropriate things to partners, family and even strangers; sexual acts such as touching or grabbing themselves or other people – and, sometimes, even a newly developed obsession with pornographic material. This disinhibition can be problematic as the person may not realise their behaviour is inappropriate, even in a public setting.
Having a ‘help card’ you can produce discreatly during difficult moments can allow you to explain in a simple way that your partner’s behaviour is impacted by dementia.
Another way to cope with specific tricky behaviour is to look for triggers, such as a desire for affection or being in a crowded or overstimulating environment. “If there don’t appear to be specific triggers, look instead at ways to support them when they behave in certain ways,” says Dr Beanland. “Helping them to calm down by distracting them or shifting their focus on to something that they enjoy can be helpful.
“For example, if someone with dementia is hungry but unable to put this into words, they may become agitated or restless. Ensuring there are snacks around could prevent this.”
Difficult relationships: Just because a marriage or partnership has been long term doesn’t mean it was happy. “If a relationship was difficult before dementia, it can be hard to take on a caring role,” says Dr Beanland. “Negative feelings from the past can impact how someone feels about their partner now.
“For example, it’s understandable to feel resentful or angry about having to care for someone who you feel has not treated you as they should in the past.
“It might be helpful to speak to a counsellor, your GP or an organisation such as Relate.”
Communication is key: It’s important for the person with dementia to feel able to say what they find difficult and how they would like to be helped. “For example, some like to be gently reminded of someone’s name or what they were discussing in an earlier conversation on some occasions, while others don’t,” says Dr Beanland.
“Turning off distractions such as a TV or radio can improve communication and focus during chats, while allowing them adequate time to respond to questions or speaking more slowly and using shorter sentences can be helpful.
“Holding eye contact can also maintain emotional connection.”
Keep going (away): A new dementia diagnosis can be worrying, and leave people wondering if e “A dementia diagnosis doesn’t necessarily mean you need to cancel any pre-booked plans such as holidays or moving home,” says Dr Beanland. “However, for some people there may be a good reason why they need to change plans or put them on hold.
“For example, a holiday or theatre trip may no longer be appropriate if your partner has developed difficulties with memory or concentration. Familiarity and routine are important to those with dementia, especially as the condition progresses, which could mean that big changes or events need to be postponed or cancelled. This might cause disappointment or frustration. Be honest and keep communicating. It can help to look at ways to adapt your plans to suit changing abilities and focus on what types of holidays or trips are possible as opposed to which aren’t.”
The charity Tourism for All UK can provide holiday and travel information for those affected by dementia.
Accessing help: “Supporting a person with dementia can be positive and rewarding, but also very challenging,” says Dr Beanland. “You may feel a wide range of emotions as things progress. You may also not have time to do all the things you need to do, especially if you are not getting as much sleep as you need.
“It’s really important to look after yourself as much as you can and take as many breaks as you are able to. This might mean asking friends, family or social services to step in. If you stay physically, mentally and emotionally healthy you will be in a better position to support both yourself and the person with dementia. It can also help you to have a better relationship with them.”
For support, information or to donate, visit Alzheimer’s Society