Tim’s story – “There is stigma around dementia”
Tim reflects on the stigma that is often attached to dementia and the importance of the Black, African and Caribbean Admiral Nurse clinics.
When someone develops dementia, it can affect their relationships with the people around them, such as their partner, family members and friends. On this page, our specialist Admiral Nurses explore how dementia might change a person’s relationships and roles, and how to cope with the impact.
Potential changes and challenges in relationships resulting from dementia
Dementia can change the way a person thinks about themselves, as well as the way other people behave towards them.
Friends and family may be concerned that the person is vulnerable, and become over-protective. They might encourage the person with dementia to stop driving or working, or to give up their usual hobbies and activities – for example, if they are worried about them leaving the house alone.
The changes in the person’s abilities can also affect the roles of their family members. The person’s spouse might feel more like their carer than their partner. Or a child who cares for a parent with dementia may feel their roles have reversed.
This can lead to distress, arguments and resentment. The person with dementia may not feel that they need to be looked after, nor agree with the decisions that relatives make on their behalf. And their family member or friend may be frustrated if the person with dementia won’t accept help, and worried if they think they’re putting themselves at risk.
Emotional changes
Many people with dementia develop changes in their mood and emotions. This may be due to their feelings around their diagnosis, or changes in the brain caused by dementia which can make emotional regulation more difficult. It may be harder for them to process their emotions and communicate how they are feeling to those around them.
It is very common for people living with dementia to experience depression, anxiety or apathy (lack of motivation towards things they once enjoyed). These changes in mood can impact their relationships with others. They may become more irritable, agitated or impatient, and withdraw from family and friends, making it harder to connect with them.
If possible, creating a safe space for the person to open up about how they’re feeling can help. If they are struggling to communicate how they feel, consider if their emotional changes are a sign of an unmet need such as pain, boredom or frustration. This can reassure the person that they are not alone, and you can explore tailored ways to help them cope with these changes in emotions and mood.
Cognitive changes
The cognitive changes related to dementia can have a big impact on a person’s roles and relationships. They might have problems with decision-making, problem-solving, reasoning and concentration. These issues can make everyday activities increasingly difficult, which could be frustrating for them and their partner and other family members.
The person might find it difficult to think logically, which could lead to disagreements. Or they might not understand that they need support and be resentful when family or friends try to help, especially if they were previously independent.
Some forms of dementia – particularly frontotemporal dementia – can also cause changes in the person’s personality and social behaviour, which can heighten tension and misunderstandings.
Communication changes
The communication challenges caused by dementia can be frustrating for the person with the diagnosis, as they might not be able to express themselves as they normally would. They may struggle to find the right words, jumble up their sentences, have difficulty following conversations or instructions, or revert back to their first language if English is their second language.
Communication challenges can also be difficult for family and friends and lead to misunderstandings.
It is important to stay calm and give the person time if they are struggling to communicate, especially if either of you becomes frustrated. Sometimes, using picture aids, writing things down or miming actions (eg pouring a cup of tea) can help with communication and understanding.
Read our tips for communicating with a person with dementia.
Changes in roles and responsibilities
When a person has dementia, it is likely to have an impact on their roles and responsibilities. However, there is support available.
Employment and income
If the person with dementia works, their relationships with colleagues may be affected. For example, their colleagues may feel that the person is underperforming, is difficult to communicate with, or is behaving in ways that are inappropriate in the workplace.
For this reason, it’s a good idea for the person to tell their employer and/or colleagues about their diagnosis. This can help to reduce misunderstandings, and reasonable adjustments can be made to their role and/or working environment to help them continue to work.
At some point, the person with dementia may have to stop work. This could have an impact on their self-esteem and lead to a loss of independence. It could also create financial pressures which put a strain on relationships, especially if the person has commitments like a mortgage and dependent children. However, they may be able to claim certain benefits to help them.
Find out more about employment and dementia.
The impact of becoming a carer
Caring for a person with dementia can be challenging, and it may affect your relationship with the person with dementia – for example, if you now feel more like their carer than their partner, or if the parent/child roles are reversed. To help manage this change:
- Say yes when family and friends offer to help, and tell them what would be most useful
- Develop strategies to address issues that tend to cause tension. For example, if the person forgets when visitors are coming, use a whiteboard for reminders or set an alert on their phone so they don’t rely on you to tell them
- Some people with dementia like to wear the same clothes every day. If this is the case, it may reduce tension and arguments if you buy another identical set so you can wash one while the person wears the other
- Consider raising awareness about dementia with family and friends or in your local community – this will help reduce stigma, give people a better understanding of the condition, and give you a sense of purpose
- Join support groups – it can help to share experiences and advice with people in a similar situation
- Stay involved with your existing social networks and hobbies to maintain a life outside caring
- Consider requesting a carer’s assessment to find out what support might be available
- Make sure you take care of your own physical and mental health and understand how these changes can impact you emotionally
Read our advice on looking after yourself as a carer.
Family dynamics
Having a family member with dementia can be difficult for every member of the family and affect the way you all relate to each other.
Young carers
When a child or teenager has a parent with young onset dementia (where symptoms develop before the age of 65), it can bring up many complicated feelings, especially if they are now taking on caring responsibilities rather than being cared for by their parent.
It’s important that the young person has someone to talk to, whether that’s another family member, a friend, teacher, a counsellor/therapist, or a support group for young carers. It’s also a good idea to inform their school/college about the situation so they can give support where needed.
Find out more about the support available for young carers.
Intimacy
Dementia can affect people’s sex life and the ways they are intimate with their partner. For example, the person with dementia may be more or less interested in being intimate than they used to be. There may also be issues around consenting to sexual activity, especially if the person’s mental capacity (their ability to make informed decisions) changes.
Being open with each other and seeking support from a professional, if needed, can help you and your partner to continue to have an intimate and/or sexual relationship, even if this looks different from how it was before.
Read our resources on sex and intimacy and find out how to get support.
Communication
Dementia can affect the way a person communicates, which can lead to frustration, misunderstandings and distress for them and their partner. However, there are ways to work around communication challenges – for example, by using non-verbal strategies like positive body language, gestures and spending time together on activities that are less reliant on verbal communication, like looking at photos or listening and moving to music.
Read more about how dementia affects communication and tips for tackling the challenges.
Rob, Amy and Chloe’s story
Read Rob, Amy and Chloe's story“It was hard coming to terms with the changes in the family dynamics. All the things Sarah and I had spoken about and dreamt about – settling down, retiring, going on holiday, watching the kids grow up – we lost all of that. I felt robbed of our future.”
Staying connected to a person with dementia
While the dynamic between you and the person with dementia might change, you can still enjoy a close and meaningful relationship with these practical steps:
- Speak honestly about your thoughts and feelings so you can understand each other’s perspectives
- Consider what you miss from your previous relationship. If the person with dementia was your confidante, could you turn to another family member or friend? If you took part in a particular activity together that is no longer possible, could you make adjustments so you can continue with it in a more suitable way?
- Try to find new ways to connect with each other – for example, through gardening, crafts, playing board games or watching films you both love
- Focus on what the person can still do, rather than on what they can’t, to help them maintain some independence
- Share news of the diagnosis with family and friends, including how it has changed your role and relationship with the person, so they can provide understanding and support
- Give friends and family advice on how to support the person so they too can continue to enjoy a good relationship with them
Supporting children and young family members
Children and young people may find it difficult to adjust to the changes in a loved one with dementia, especially if their parent is diagnosed. But with open communication and support, they can maintain a close relationship, even if in a different way from before.
Changes in availability
Children and young people may struggle to cope if the person with dementia is less able to engage with them than before, for example if they are no longer able to help with homework, attend events like sports day and school plays, or just spend time with them at home.
Parents who are in a caring role – whether that’s for the other parent or a grandparent or other relative with dementia – may also have less time to spend with the young person.
If you have children or teenagers and are also caring for someone with dementia – known as being a ‘sandwich carer’ – it can be helpful to ask other family members or friends for support. They might be able to spend some time with the young person, or help with some of the caring duties to free up time for you to spend with your child.
Open communication
While it can be difficult to have conversations about dementia with a child or young person, trying to conceal what is happening could lead to misunderstandings and make them more anxious, rather than less.
Being able to communicate openly about dementia can help young people understand the changes that are happening, so it’s important to give them opportunities to talk about how they feel. This will enable you to explain the situation and reassure them that they are still loved and valued.
Some steps include:
- explaining what dementia is in an age-appropriate way – our ‘Let’s talk about dementia’ video might help
- encouraging the young person to express their feelings – they might prefer to speak to another trusted adult, such as an aunt/uncle, family friend or teacher, if they find it hard to talk to you
- considering involving a counsellor or therapist if they need more in-depth support
- giving them an outlet for their emotions – this could be through art, drama or sport, for example
Explore our resources for supporting children and young people.
Coping with changing roles and responsibilities
When someone has dementia, their loved ones often need to take on new roles and responsibilities. However, there is support available.
Financial support
The person who is living with dementia may be entitled to certain financial benefits and support, which could ease some of the strain on them and their loved ones. Their carer can also request a carer’s assessment to identify measures that could help them in their caring role, which might include financial support.
Managing work and caring
Balancing work and caring can be particularly difficult. If you’re in this position, it’s a good idea to speak to your employer about the situation. They may be able to make adjustments to your role or working conditions, such as flexible working, that make it easier to combine your dual responsibilities.
The Admiral Nurses in our Dementia at Work Team have written a guide to working while caring for someone with dementia.
Emotional and wellbeing support
It can be very difficult when a loved one is diagnosed with dementia, and to see the changes in them as their condition progresses. You might be grieving the future you were expecting to have, feel guilty if you are struggling to cope with the changes in your role and relationship, or be worried about the impact on your finances or family dynamics.
It’s important to get support, whether that’s from a family member or friend, your GP, a counsellor or support groups for people in a similar situation.
Read more about coping with the emotional impact of a dementia diagnosis.
Seeking professional caring support
Caring for someone with dementia can be very difficult, especially as their condition progresses. For many, it becomes a 24/7 role.
While it’s natural to feel like it’s your duty to care for your loved one, there is nothing wrong with seeking professional support, whether that’s from a day centre for the person with dementia, a home carer or eventually, a care home. Having someone take over some of your caring duties can relieve some of the strain on your relationship with the person and free up time to spend enjoying each other’s company.
Read more about choosing a home carer or care home.
Planning for the future
When someone develops dementia, it is important to have a conversation about their future. These discussions can be difficult but will ensure everyone understands the person’s wishes and agrees a way forward for when their condition progresses.
Legal and financial planning
A lasting power of attorney (LPA) is a legal document that appoints someone to make decisions on the person’s behalf if they lose the mental capacity to do so themselves. There are two types: health and welfare and property and financial affairs.
It’s important to make an LPA as soon as possible after a diagnosis of dementia to avoid disagreements later on about who should make decisions on the person’s behalf. Read more about making an LPA.
Advance care planning
Advance care planning involves working with the person with dementia to make a plan for their future care and medical treatment. This can include long-term care considerations, for example whether the person would prefer to be cared for at home or in a residential setting.
Download our template for advance care planning
Making an advance care plan will ensure that the person’s family and friends can respect their wishes as far as possible. Our guide to advance care planning and template below can be helpful when having these discussions
Sources of support
To speak to a dementia specialist Admiral Nurse about changing relationships and roles or any other aspect of dementia, please call our free Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm) or email helpline@dementiauk.org. Alternatively, you can pre-book a phone or video appointment with an Admiral Nurse.
