Most people experience a mix of reactions as they adjust to living with dementia. People commonly describe feelings of shock, denial or disbelief, helplessness, anger, fear, anxiety, sadness, guilt, disappointment, resentment and frustration. For some people there can be feelings of embarrassment and isolation. For others the diagnosis may actually come with a sense of relief as previously unexplained symptoms are now accounted for.

Dementia brings with it a certain level of uncertainty. Uncertainty is difficult to hold, and facing the future with a new diagnosis can feel overwhelming. Emotions, thoughts, behaviours, physical reactions, and relationships with other people may all be affected. These are all part of the process of adapting to a new diagnosis. They may come and go and will probably change over time. 

Some people find the emotions and feelings more difficult than the practical adjustments that are also likely being made after a diagnosis of dementia. People often say that they feel they don’t have the time or head space to think about how they are feeling, but burying these feelings may be unhelpful in the long term. There is no one right way to express our feelings and emotions. What is important is that we recognise when we need to express them and find ways of doing so that are helpful and supportive for us. One-to-one sessions with the Direct Support Team and group meetings at Rare Dementia Support (RDS) provide opportunities for conversations about whatever is of concern and importance to our members. Please contact us at contact@raredementiasupport.org if there are issues you would specifically like to talk about.

There are lots of different types of talking therapy, many of which involve working with a trained therapist. This may be one-to-one, in a group, online, over the phone. For some problems and conditions, one type of talking therapy may be better than another. Different talking therapies also suit different people. You can access talking therapies on the NHS. A GP can refer you, or you can refer yourself directly to an NHS psychological therapies service without a referral from a GP.

Please see the tips and strategies, the what can we do to help ourselves , and the additional resources sections further down this page for additional support information.

When you read the information below, and elsewhere on this website, you may find that difficult emotions arise. In this situation, this is very normal. You may find that challenging thoughts, feelings or sensations may get in the way of engaging with the material on our website. We always encourage you to take care of yourself. Sometimes that means receiving information in small bits at a time. It’s okay to step away and come back later. You may also want to try some additional or different methods to support yourself, if needed. We offer the suggestion of ‘dropping anchor’ when these stormy emotions seem like swells on the sea. Our colleagues at RDS Canada have provided further information on dropping anchor that you may find helpful to explore.

Identities and roles

We all have a certain image about ourselves‒ our identity. It helps us make decisions and helps us know how to behave. It is also how we think other people define us. Our identity is shaped by many features. There are some parts of our identify that are stable and don’t change, regardless of our circumstances and stage of life. For example, our date of birth, where we were born, who our parents are etc. It is also shaped by more fluid attributes such as our memories, our experiences, what we do, and also by our relationships and our roles within them. 

As we live with dementia, either as a diagnosis for ourselves or for someone we know, we may become aware of changes in the way we feel about the relationships we have with people around us. The diagnosis may affect the experiences we will go on to share with them, and the roles we will play within our relationships. Ultimately, this may affect how we think and feel about ourselves.

It is inevitable that there will be some changes to the ways in which relationships and roles previously worked, and that people begin to live with a new identity based in part upon the support and care they need or provide. There will be new, changed, and ongoing assumptions about, and expectations of, everyone involved.

For some people this can open up opportunities and bring some positive aspects which they hadn’t previously considered possible. For others there may be a reluctance to compromise roles and positions they value and enjoy and they may find it difficult not to focus on ‘the person that they used to be’.  

It is important that the impact of these changing roles is recognised, both for the person living with dementia and for the people who support them. Embracing some of the practical aspects, such as having an assessment of needs for both the person living with the diagnosis and the main carer, can be a helpful way to start acknowledging not only new needs, but new ways of working together to address these needs.

There may be adaptations we need to make, but for many people living with or affected by dementia, meaningful and fulfilling identities, roles and opportunities remain available. It will take time and likely some trial and error to embrace these opportunities (see the RDS website page on living well and empowerment for further information). Adapting to holding a variety of roles with the people we care for and support, often takes time, and isn’t always easy. For example, identifying as a carer whilst we support someone with personal care, or as someone who requires assistance whilst we are in need of support with dressing, yet being able to hold each other tenderly in other circumstances, as partners, family members or friends.

Loss and grief

Everyone who knows and cares about a person who has been diagnosed with dementia will be adjusting to changes of one sort or another. So too will the person who has the diagnosis.

As people adapt to living with dementia, they often describe feelings of loss. Some of the things people feel they have lost include the future they thought they would have, a particular lifestyle, the ability to work in the way they are used to or to do hobbies and activities that previously brought meaning and pleasure. Some people describe feeling that they have lost their rights: the right to drive, the right to make certain plans, the right to continue in the same type of employment are just some examples people have shared. There may also be some losses associated with the identity and relationships that people enjoyed, with a change to the level of friendship, companionship, intimacy, and support that was previously appreciated. Losses of health, financial security, and a sense of control, are amongst many other losses and changes that people describe adapting to following their diagnosis of dementia.

Grieving for these types of living losses that are associated with a diagnosis of dementia is increasingly recognised and understood. It is sometimes referred to as anticipatory grief or pre-death grief. The effects are similar in many ways to those we have when we grieve for a person who has died, except that they are being experienced in varying degrees all along the dementia journey, from the point of diagnosis onwards.

We don’t necessarily recognise that grief is what is being experienced along the dementia journey– and as a result we are not always well placed to understand, acknowledge, or accept it. Whilst we want to maximise skills and abilities which remain, it is important that this is not at the expense of grieving for what is lost.

Anticipatory grief

People with a long-term illness and their carers, family and friends sometimes experience feelings of grief as they think about and imagine how the dementia might develop and the losses and changes it may cause. This type of grief is called anticipatory grief– we are preparing for the loss ahead of it actually happening. 

Sometimes the anticipation can be worse than the eventuality. Some people describe adjusting to their grief during dementia‒ finding it easier to deal with over time. For others, the grief might feel more difficult to hold over time, as symptoms change and people navigate additional losses. Fluctuations in feelings of grief and loss over time are a normal and understandable part of living with and alongside dementia.

Ambiguous loss

This refers to the type of loss we may feel when a person is physically here but may not be mentally or emotionally present in the same way as before. Ambiguous loss can complicate grief. The terms non-finite loss, living loss and intangible loss are other words used to describe this type of experience of loss we are embracing. These losses are ongoing in nature, and need to be lived with, adapted to and adjusted to on an ongoing basis.

Family and friends may not recognise our need to grieve the many losses being experienced at different stages of the disease and therefore may not be in a position to provide us with the support we need. People often describe not feeling able to share these ever changing and ongoing losses with friends and family, for fear of overburdening or tiring them. 

Chronic sorrow

This term relates to the ongoing response to losses that are continual in nature. The sense of sorrow is ongoing and may escalate in intensity and progress over time. It may be linked to a significant moment, for example, the diagnosis of a rare dementia in a person still in their mid-life, but is also linked to the ongoing realisation of what that diagnosis means over time, and the impact it is having and will continue to have on the lives of the people impacted by the diagnosis. 

Disenfranchised grief

This term relates to the grief that is experienced when we experience a significant loss, but there is little or no social recognition for it. We may feel unsupported or that the people around us don’t feel we have a right to grieve for the loss we are experiencing

Anticipatory grief, ambiguous loss, chronic sorrow and disenfranchised grief are often not recognised or understood, by ourselves and by the people around us. If our grief isn’t acknowledged or understood by the people around us, it may seem additionally painful, and we may feel more alone. 

Reactions to loss and grief

When we are adapting to multiple losses over many years as dementia progresses– our capacity to recognise and process each loss may be reduced. We may get so used to ‘living with grief’ on a day-to-day basis that we don’t recognise it anymore. It becomes the norm. But it is still there. Our experience of loss and grief can affect our ability to cope with the day-to-day symptoms of dementia. 

Most people experience a mix of reactions to the losses and grief associated with a diagnosis of dementia. Emotions, thoughts, behaviours, physical reactions and relationships with other people are all affected. There are compromises and adjustments to manage. Many of these will be thrust upon us unexpectedly and may feel quite frightening and overwhelming. 

Anger, resentment, guilt, sadness and stress are all commonly described by members of Rare Dementia Support in discussions on this subject. However, the grief we experience as a result of these significant losses is not just about feelings and emotions. It is also, in varying degrees, a cognitive, behavioural, physical and spiritual experience.

These grief reactions to the losses that accompany a diagnosis of dementia are normal. Some people may feel they don’t have the time or head space to think about their grief and loss but not doing so may be unhelpful in the long term. It is important to recognise them and to seek out the right sort of support.

RDS periodically runs sessions from The Road Less Travelled programme. These sessions help the carers of people living with a rare dementia identify, better understand, and process various aspects of loss and grief that are experienced all along the journey with dementia.

Self-stigma and self-esteem

Thanks to educational programmes and awareness raising initiatives, there is a growing understanding about the causes of dementia. Despite this, some people find it difficult to acknowledge the diagnosis and describe feeling that there is still a negative stigma attached to it with unwarranted feelings of embarrassment being felt. At Rare Dementia Support we are working hard to dispel misunderstandings and to promote wellbeing and self-esteem within our community and members, firmly believing that nobody living with dementia should feel this way (see the RDS website information on the RDS Champions volunteering scheme for further information about the way some of our members advocate for RDS and raise awareness of rare dementias).

Sadly, there are some inevitable ways in which a person’s self-esteem might be impacted by living with dementia. For example, if keeping up with conversation has become difficult, or someone is no longer able to drive, or if managing finances or the cooking and cleaning schedule has had to change or be relinquished. Not being as independent as we were previously, and with the knowledge that our needs will likely increase over time can also impact self-esteem. Family and friends may also find it difficult to adapt to new roles within the relationships and friendships.

Spirituality

Being diagnosed with a life-changing illness such as dementia sometimes leads people think about life and the way they define what is important to them. It can also affect the way we think about death and dying, in ways we may not previously have done.

People often ask themselves “Why me?” or “How can this have happened?” They may feel shocked or distressed for a time, as they adjust to the information and try to make sense of the implications.

Our spirituality is not the same as our faith or our religion. A person’s spirituality involves everything which provides us with a sense of purpose, meaning and connection, and includes the way we think about ourselves, the relationships we have with other people, our views and opinions, our feelings and also our beliefs. Hence, a religious belief may be one of the many things that affects a person’s spirituality. 

For some people, a diagnosis of dementia strengthens their beliefs and the significance they hold. For others, the questions and uncertainty that such a diagnosis brings can cause them to question, doubt and feel increased uncertainty at what lies ahead. 

It is important to be aware that people may need time and support to think about matters past, present and future, which are of deep significance to them.

Telling other people

It is normal to find things difficult to talk about whilst we are still shocked or uncertain about them ourselves. The diagnosis of a rare dementia will probably not have been expected and it will take time to absorb the full implications of the diagnosis and how it might go onto affect life in the present as well as the future.

Knowing when and how to tell family, friends and colleagues about a diagnosis of dementia can be difficult. It can take time for people to understand and come to terms with a condition they have likely never heard of before. Many RDS members describe struggling with when and how to tell other people about the diagnosis, as well as deciding who to tell. It is important to remember that there is no one right way or time to tell the people around us. For some people sharing the news soon after receiving it feels easier than holding on to it, while for others, taking time to process and consider the implications of the diagnosis is more helpful.

People are often surprised by the reactions and responses of other people to the news of a diagnosis. Whilst some of our friends and contacts might struggle to find appropriate ways to respond and offer support, others surprise us by stepping into roles we had not anticipated or expected. People affected by a rare dementia diagnosis often find themselves as educators and ambassadors for raising awareness; having to advise on general and symptom specific strategies that are helpful.

Personal relationships

Everyone who knows and cares about a person who has been diagnosed with dementia will be adjusting to changes of one sort or another. So too will the person who has the diagnosis. Everyone will be adjusting in their own way to what the diagnosis of dementia means to them and how it might impact their relationships. It is normal for this to cause feelings of uncertainty and it may take time for dynamics within a relationship to re-calibrate.

Some people can feel isolated when they are diagnosed with dementia. It can help to talk to other people, be that friends, family, professionals, or other people living with the same diagnosis. The Direct Support Team are available for these types of conversations, and can also direct people to groups with other people with similar diagnoses and in a similar situation. Please register as an RDS member for further support.

For the person living with dementia, and everyone who knows, cares for or cares about them, there may be compromises and adjustments to manage. Many of these will be thrust upon people unexpectedly– and may feel quite frightening and overwhelming. 

Most of the people in our social networks have the intention to maintain relationships in supportive and helpful ways, where they can. However, sometimes people may behave in ways or say things that don’t feel helpful or supportive. This is usually not intentional and is most likely due to uncertainty about what the best and most helpful response or action should be.

Over time, it will be helpful for the significant people in our social networks to be told clearly of the most helpful ways they can support a person living with dementia. This can feel like a violation of the previous norms of the relationship, but it is difficult for people to guess what might be helpful, not only in terms of practical help but also in respect of maintaining the relationship.

Intimacy

All relationships have varying levels of intimacy. Intimacy relates to the closeness that is present in a relationship which allows for a mutual vulnerability, openness and sharing. Intimacy can be experienced emotionally, experientially, intellectually and, in some relationships, sexually.

A diagnosis of dementia can affect the ways in which intimacy is expressed and shared within relationships. While the need for safe and loving relationships continues, there may be changes to the way it is expressed and given. For example, people may appear less sensitive to other’s needs, become less able to provide the support they previously did within a relationship, or appear to be more demanding. Sometimes, intimacy may be shown in contexts which don’t feel appropriate.

People living with dementia may feel less certain, less confident and possibly frustrated by the range of ways that their dementia is affecting their lives. These changes can affect the way they feel and behave towards the people around them, and the relationships they can engage in.

It is important to remember that it is the damage that dementia is causing within a persons’ brain that is the cause of these changes, and not an intentional change within the person themselves. Some changes may be relatively long-term, whilst others can be intermittent and unpredictable

Living with dementia can affect some of the ways in which intimacy is expressed and shared within relationships. It can be helpful to identify some of the factors which might affect the intimacy within a relationship.

• We may be adopting increasing roles, responsibilities and needs for care, but we are still a spouse/partner/parent/sibling/child/friend.
• It can feel like a violation of the previous relationship dynamic when roles are assumed which make us feel that we are no longer an equal partner.
• Feelings of guilt, anger, resentment or frustration are often associated with this feeling of violation, which in turn can reduce the sense of intimacy.
• Not being able to make each other happy in the same way anymore can be a source of conflict and uncertainty within a relationship.
• Wanting to have meaningful conversations about the diagnosis can be difficult unless both parties are willing and able, and this can lead to feelings of ‘hiding something’ within a relationship.

Sexual intimacy

Sexual intimacy can be a fulfilling way for people to maintain a sense of ‘togetherness’ and to show their love and care. Dementia does not have to change this. Many people continue to enjoy sexual intimacy and find it a positive way of affirming feelings, care and love. 

However, it can also be the case that sexual desires and needs change after a diagnosis of dementia. In some cases, there may be a reduction in the interest for sexual intimacy. This might be due to the disease itself, for example, a person may feel less sure how to respond to sexual urges or how to perform sexually. Or it may be due to a lessening ability to initiate activity generally, including intimate engagement. Navigating the changes in our relationship roles and an increasing need for, or provision of, support and care can sometimes change the way we feel about sexual intimacy.

There may be an increased interest in sexual intimacy – either for the pleasure and reassurance it provides, or because people may forget how recently sexual activity has taken place. Some of the rare dementia diagnoses have very specific symptoms which might affect the way we engage with each other.

• Frontotemporal dementia, for example, can reduce a person’s ability to initiate activity of any kind and affect the ability to engage with empathy, both of which will have significant impact on intimacy.
• Being less able to navigate our own body due to changes in our visual and spatial awareness can make us less confident as well as less able to respond the sexual triggers we previously enjoyed and shared.
• Not being able to express our intention, or share words of affection and encouragement in ways we previously did can also impact on how close we feel and how we respond in moments of closeness.
• Reduced recognition of the emotional attachment to sexual intimacy can also be a feature in some dementias. Where empathy is reduced both partners may experience less of a sense of intimacy. 

The issue of consent for sexual activity can be a cause for concern amongst some people. While there is a legal requirement for consent prior to sexual activity taking place, this consent can be given in a variety of ways. Signs of pleasure and enjoyment might be interpreted as signs of consent, in contrast to expressions of disinterest, shunning, confusion or distress, which would suggest that consent is not being given. The capacity to consent to sexual intimacy can fluctuate and as in all relationships, consent may be given in some circumstances and not in others. It is important that both parties feel able to say ‘no’ as well as ‘yes’ to sexual intimacy.

Changes in sexual interest and intimacy can be hard to adjust to, both for carers and for the person living with dementia. Being able to talk about the changes and how they make us feel is important. If it is possible to discuss the issues together, then make the most of this opportunity. Otherwise, close family members, friends or appropriate professionals can be be helpful to have these important conversations with.

Asking for help

Recognising that we need help is not always easy, whether we are living with the diagnosis ourselves, or supporting someone with a dementia diagnosis. When we have gradually increased the number of things we do over a relatively long period of time, we may find it particularly difficult to see that we are becoming overwhelmed with more than we can sustain. In some cases a sense of duty, responsibility and pride can make it hard for us to appreciate that we need help.

Help or support can be provided either practically or emotionally, and it can be difficult to work out how the two differentiate. For example, receiving enough emotional help often allows us to continue more ably in our practical roles and vice versa. 

Choosing who to ask for help can also be complicated. It may feel like a violation of previously defined roles when we find ourselves asking family, friends and neighbours for support. This can make us feel uncomfortable. 

Who else is affected?

Like any diagnosis of a serious illness, dementia has an impact not just on the person living with the diagnosis, their family and friends, but also on a wider circle of contacts, friends, colleagues and associates. It is impossible to predict how each person within this wider network will be impacted, but it is worth recognising that everyone will be reacting according to their own personal circumstances and within the scope of their understanding and ability.

Friends may find it difficult to adjust to the changes that the diagnosis might mean for the friendship and be unsure how to manage this change. Some RDS members have described how people who were regarded as good friends seem to have withdrawn and not stayed in touch following the sharing of the diagnosis. There are various reasons why this might be the case– sometimes people find it uncomfortable to deal with a person who now has dementia because of their own uncertainties or fears, but this does not mean they no longer care. On the other hand, people describe being surprised by new friendships or by people who have stepped up and into closer supportive roles once they are aware of the diagnosis.

RDS facilitates a range of peer support groups both for people living with a rare dementia diagnosis, and for their care partners, family and friends. These groups provide opportunities for groups of up to 12 RDS members (separate groups for people living with a rare dementia and care partners) to meet via a video call with a member of the RDS team to spend time sharing experiences, questions and advice. If you would like more information about these groups, please email contact@raredementiasupport.org.

Older children may struggle to know how to express what they are feeling and may also have feelings of embarrassment about behaviours they find unsettling or upsetting. Younger children might find it relatively easy to adapt to the changing needs of a family member with dementia. It is sometimes less complicated for them than it is for other older children and family members. Most schools and educational institutions have a counsellor or mental health wellbeing officer in place. These people may be able to offer local support, as well as signposting to helpful additional resources. It can be helpful to let schools and other organisations that young people are part of, know that there is a significant issue at home that is being lived with. It may help explain behaviours of comments that might otherwise seem out of character or place. Unfortunately, there is a widespread lack of understanding about rare dementias, and so it may be helpful to have some information to provide to the people in these establishments to help them better understand the situation. You may find it helpful to get in touch with the Direct Support Team to discuss this further– please email contact@raredementiasupport.org.

There are a number of ‘young carers’ organisations that sit within local carers centres and where support for younger carers can be accessed. Please see the Carers Trust website for further details.

Siblings can find themselves feeling unsure about how best to keep up their relationship with a brother or sister who has developed dementia. There may be uncertainty about role dynamics, especially if there are other close family relationships to navigate. It is common for family members or friends to take on a range of caring responsibilities between them. Sometimes issues arise within family relationships where some members feel they have taken on more caring responsibilities than others. This can lead to feelings of resentment and frustration. It is helpful to talk about these feelings. Taking responsibility for the paperwork and finances can be just as much a contribution as being available for practical care needs. Acknowledging all the roles that people may be taking on, talking about these, and providing an opportunity to share how we feel about them is important to enable us to work together in the best way we can. 

Colleagues may feel uneasy about redefining relationships with people they have known well, or for a long time, but with specific and boundaried roles within the workplace environment.

Parents will probably not have expected to face a diagnosis of dementia in their adult children and are likely to struggle to see an adult child coming to terms with a dementia. They may have a sense that the diagnosis ought to be theirs, not their child’s.

The dynamic between close partners and spouses may feel strengthened in some ways and compromised in others.

Family members and friends sometimes describe feeling that they have taken on the role of being an ‘ambassador’ for the person with a diagnosis. This may be by stepping in ‘in the moment’, for example, by explaining that behaviours which may seem out of place are due to a diagnosis of dementia, or by acting on the person’s behalf, for example with the banking or finances. People may also find that they want to act as ambassadors on a more general level, promoting the needs and rights of people living with dementia, and sign up to become volunteer RDS Champions, raising awareness of rare dementia across a range of settings and roles.

Adapting to new dynamics within a wide range of relationships is normal and will take time. Many RDS members have shared positive stories, describing how relationships may have changed, but that these relationships can still be positive.​There will be times when everything feels to be going well, with support, understanding and inclusion in abundance, but other times where people feel misunderstood, unsupported and isolated in the relationships with people around them.

This is to some degree inevitable, but there are ways we can work to mitigate some of the challenges described. Try to keep conversations open and honest, encouraging each other to ask questions and share feelings, fears and expectations. Seeking professional support for emotional or practical aspects of the new roles we are adapting to can help redress some of the imbalances. Make enquiries of what is available as early as possible, to enable and empower decisions in the future.

Becoming a carer

Not everybody feels comfortable with the term ‘carer’. When we take a step back and list out the many and varied new roles that we find ourselves incorporating as we seek to adapt to the new responsibilities being requested of us, it can seem that this simple short word doesn’t do justice to the enormity of the role. It is however a label that is helpful to some degree in allowing us to access support, advice and sometimes financial assistance.

Whether it is a role we are prepared for or not, the reality of living it 24/7 can be challenging, as well as rewarding, in ways we hadn’t envisaged or expected. There may be responsibilities we thought we would adapt to easily, which we find particularly challenging, and likewise, tasks we thought previously impossible that we take on with relative ease.

Carers often describe feeling frustrated that the people around them don’t appreciate the number of changes they are making to their own lives to support the person they love or care about. This can negatively impact not only how we feel, but how we react to and cope with the scenarios we face. Thinking about a succinct yet honest answer to the question ‘How are you?’ or ‘How are things?’ can be one way of at least enlightening people in our social and support networks about the reality of our situation. Likewise, having a list of potential tasks to request help with, when friends, family or neighbours leave us with the comment, ‘Let me know if there is anything we can do to help’, can allow us to have a more proactive approach to maximising on these offers.

Other approaches we might find helpful include:

• seeking out practical advice, information and support, as well as identifying where emotional support will come from as we continue in this role
• registering as a carer can be a helpful way to enable us to look at ourselves through the lens of this additional identity, and to consider ways in which we might need to adjust to it
• trying to separate the person that we care about from the dementia by reminding ourselves that it is a brain disease which is the cause of their behaviour. Working on ways to blame the dementia rather than the person for the challenges that we may be facing
• thinking about ways to enable time apart as well as time together, from the outset, can set in place good habits of respite, which benefit everybody in the longer term. Over time, the form that respite care takes will change. It might begin as an hour or two to ourselves, to take part in activities we enjoy or need to do. We may involve family or friends to allow us to get away for a few days, or might engage a care agency or care home for care services that allow for a longer break
• RDS recognises that for many carers, the additional challenges of a rare dementia diagnosis can add to the carer responsibilities in ways that feel at times, overwhelming. The diagnosis-specific peer support group meetings, carer support group meetings and the themed programmes that are offered periodically throughout the year are ways in which we seek to provide additional bespoke support, alongside the one-to-one support calls that can be arranged. For further information and support, contact the RDS Direct Support Team by emailing contact@raredementiasupport.org and please read the information on initital contact with RDS.

What can we do to help ourselves?

• The Direct Support Team and the support group meetings at Rare Dementia Support provide opportunities for conversations about whatever is of concern and importance to our members. Please register as a member and contact us at contact@raredementiasupport.org to let us know if there are issues you would specifically like to talk about.
• RDS also facilitates a range of peer support groups both for people living with a rare dementia diagnosis, and for their care partners, family and friends. These groups provide opportunities for groups of up to 12 RDS members (separate groups for people living with a rare dementia and care partners) to meet via a video call with a member of the RDS team to spend time sharing experiences, questions and advice. Get in touch with us via the contact@raredementiasupport.org address for more information.
• Make time to look after ourselves. Living with the symptoms of dementia can be uncertain, stressful and exhausting at times. It is important to factor in ways to look after ourselves even when we do not feel as if we have enough time or energy for this. 
• Be kind and compassionate to ourselves. We are doing the best we can, with the resources we have available to us, to manage a situation we didn’t ask for. Allow for extra time and patience.
• Set realistic, manageable targets and goals as we seek to build in self-care. For example, a walk around the block might be more achievable than a walk around the park and will give us the benefit of a sense of achievement and control if we manage it.
• Try talking therapies. For both the person living with the diagnosis, and their family, friends and carers, the opportunity to speak about the way a diagnosis of dementia is affecting them can be helpful. There are lots of different types of talking therapy, but they all involve working with a trained therapist. This may be one-to-one, in a group, online, over the phone. For some problems and conditions, one type of talking therapy may be better than another. Different talking therapies also suit different people. You can access talking therapies on the NHS. A GP can refer you, or you can refer yourself directly to an NHS psychological therapies service without a referral from a GP. We can adopt new and different strategies to help us manage difficult feelings in the midst of difficult times.
• Professional therapeutic interventions in the right environment can be helpful. Art, writing, music, and dance activities can provide an opportunity to express emotion without using words. Physical activities may provide a positive opportunity to channel energy. Enquire about local activity groups through AgeUK, local community centres or libraries and through local dementia services. Dementia-specific groups may have a variety of opportunities we can benefit from, but also be mindful that there may be general community activities available to us, which we can access with some additional support.
• Trying to achieve a sense of balance is important as we journey through all that a diagnosis of dementia entails. Some strategies work better for some people than others. Be open to trying new ideas for self-care. Anything is worth trying once– we don’t have to do it again if it doesn’t prove helpful.
• Recognising that we need help is not always easy. Remember that help can be provided either practically or emotionally and the two are often interlinked. Feeling emotionally supported can help us keep going with some of the practical challenges we may be facing, and vice versa. Try to identify friends, family, professionals or people from other networks who are able to offer help and support.
• Allow ourselves to feel whatever we are feeling. Tears are just as much an expression of emotion as words– don’t be afraid to shed them. Learning to sit with difficult emotions takes time but is often more helpful than pushing them away and burying them.
• Actively choosing positive approaches and strategies to help counter negative experiences and reactions. Mindfulness is an increasingly popular and effective technique that many people use to help find balance especially when times are challenging. Try controlled breathing exercise, guided meditations, or other visualisation techniques as a way to re-focus attention in a constructive way.
• Speak out, record or write down stresses, fears or anxieties. They often lose some of their control over us when we acknowledge them.
• Try to stay connected with people, activities or groups that are meaningful or important to you.
• It can help to understand what we do and don’t have control over, and to try to take control over the things that we can. A few moments in the garden, baking a cake, making a meal, or sitting down to listen to a piece of music for 5 minutes can all help promote a sense of order and control.
• Pay attention to spiritual needs as well as practical and emotional ones. Prioritise the things that affirm a sense of meaning, connection or pleasure in our life. Religious activity is one example of this, but so is taking time to appreciate the world around us, listening to the birds singing, and appreciating art or music. Seek out churches, mosques, temples or other places of worship and community, community groups, interest groups and activity groups which can incorporate our involvement. Make direct requests to these groups regarding their ability to accommodate any additional support needs we have.
• Keep doing as many activities as we enjoy. Be prepared to adapt them according to changes in our abilities, and to try to find pleasure in their process, not necessarily their outcomes. We may need to manage and change our own goals and expectations of ourselves to be able to do this.

Living with autosomal dominant/familial dementia

Autosomal dominant/familial Alzheimer’s disease (FAD) or autosomal dominant/familial frontotemporal dementia (fFTD) diagnoses bring additional complexities for the people and families living with them. The need for support which incorporates these additional complexities is paramount.

While all the support services provided by Rare Dementia Support (RDS) are accessible to members affected by FAD and fFTD, there are some additional support offerings available for these members.

Adapting emotionally to either living at risk of inheriting, or having inherited a gene which causes dementia, can carry significant challenges, in addition to those which typically apply to people living with non-inherited dementia.

Based on the experience of, and communications shared by our members living with FAD or fFTD over many years, there is a consensus about the type of additional adaptations they have to navigate. They are presented here by way of affirmation to our members who may be embracing these issues for the first time, and as reassurance to those longer standing members that they are not alone.

• Decisions about genetic testing. When there is reasonable chance that a disease causing gene may be responsible for a particular disease, options around testing for that gene become available. Typically, the person living with the disease is the person who is tested in the first instance. The process of genetic testing is usually initiated by a referral to a regional genetics testing centre via the GP or another responsible clinician. Quite apart from the logistical and practical process of the referral, families must contemplate the impact that the results of a genetic test will have upon them. Not everyone has the same wish to know whether a disease has genetic cause in their family and once test results are known, it is impossible to ‘un-know’ them. The implications of positive test results have ripple effects into branches of the family who may have been hitherto unaware of the possibility of a genetic disease within their wider family cohort. Families can experience tension and disagreements in ways they are unaccustomed to, as members grapple to come to terms with decisions they feel are best. On the other hand, family members sometimes come together in new and positive ways to support each other through a time of uncertainty and new understandings. Either way, there are often challenging conversations for families to navigate and difficult decisions to make. Making time and space for these conversations to happen is a safe space and with people who appreciate the significance and impact is important.

• Decisions about predictive testing. For families in whom a disease causing gene has been identified, blood relatives of the person living with the disease have the option to be tested to see if they carry the same disease-causing gene. Testing for a known gene whilst a person is still well or asymptomatic is referred to as predictive testing. Making the decision to proceed with predictive genetic testing is often complex. There is no ‘best’ or ‘right’ decision, and people will come to different conclusions about the appropriate decision for them. Age, work, social and family circumstances are among some of the factors which influence the decisions people make. There are several key aspects which families describe as significant in their decision making in this respect:
  • how well they are able to adapt to living with uncertainty about potentially carrying a disease-causing gene
  • whether knowing the outcome of a test result will lead to significant lifestyle decisions or changes
  • family planning considerations
  • the chance that disease modifying treatments may be available in the future

Having the opportunity to discuss these important aspects of decision making in a safe and space and with people who appreciate the significance and impact is important.

• Living with risk or living with a positive genetic status while still making the most out of life. There can be a significant ‘mindset shift’ required as people adapt to living with the risk of developing an inherited disease, or with the knowledge that they will. People respond and react very differently to the news that they carry a disease-causing gene. It can be difficult for family members to appreciate these differences, and they can sometimes be a source of misunderstanding. This is particularly challenging, as it compromises a family’s ability to pull together and support each other. Being able to ‘hold conflicting realities’ can require intentional effort on behalf of everyone involved. For example, ‘holding’ sadness around the reality of a life-changing disease, while still being able to experience celebration and joy in other aspects of life can involve a process of adapting that requires support and help from a trained therapist, alongside the support of family and friends.

• Caring for a family member whilst living with risk or a positive genetic status. Caring for and supporting someone we know, who is living with dementia, can be emotionally and physically challenging. When we are also living with the likelihood, or certainty, of developing the same disease, there are additional complexities to the impact of caring. We may experience changes in the way we feel about family members, as well as our responsibilities and relationship to them. There can be changes to our identity within the relationship dynamic, pressures on the roles we play within these family dynamics and a wide range of emotions that we feel in response to the situation we find ourselves in. As well as the more positive emotions that we may experience as we provide care and support in ways we want to and are able, anger, grief, sadness, resentment, fear and uncertainty are typically described as commonly held emotions amongst caregivers. These are difficult emotions to live with and have an impact on our wellbeing.

• Managing workplace/career decisions while living with risk or a positive genetic status. Making life impacting workplace and career decisions about things which will influence our future can be challenging at the best of times. They can be additionally complex when we are living with the additional uncertainty about our future risk or a positive genetic status. While UK legislation under the 2010 Equality Act means that employers generally cannot require broad disclosure of genetic test results purely on the basis that a person has a genetic predisposition, there are some careers where there are requirements to adhere to additional medical standards or a duty to inform occupational health or other industry regulators if a medical condition could potentially put others at risk. Depending on the legalities of the employment contract, there may be some professions, for example airline pilots, firearm holders, surgeons and anaesthetists, and commercial drivers in which employees have agreed to disclose positive predictive genetic risk results. Checking in advance what benefits, pension or retirement provisions are available will be an important part of the process for some people living with, or at risk of inheriting a disease-causing gene.

• Concerns around eligibility for insurance. The UK Government and the Association of British Insurers recognise that genetic testing is a valuable tool in informing the diagnosis, prevention and treatment of ill health. The Association of British Insurers (ABI) and the UK Government have an agreement known as the Code on Genetic Testing and Insurance which is relevant for people who carry a gene for an autosomal dominant condition that causes dementia, or are at risk of carrying one of these genes. The code explains what insurance companies can and can’t do relating to genetic testing when people apply for insurance. Whilst people should not be discouraged from accessing genetic testing because of concerns that this might compromise their ability to access insurance cover, in reality many people do have concerns that premiums might increase if they declare positive results. Please visit the Genetic Alliance UK website for further information.

• Difficult emotions. It is natural to feel a range of emotions because of the circumstances we find ourselves in. Fear, anger, resentment and guilt are commonly described in response to the situation we find ourselves in, and having a safe space to talk about these emotions is important.

• Mixed reactions to a negative test result. Many of our members describe a range of mixed responses to the news that they do not carry the gene responsible for FAD or fFTD. As well as relief, they typically describe feelings of additional sadness for the family members who have received positive test results. Several describe feeling uneasy or ‘guilty’ that they have been spared this journey, whilst others in their family have received a positive result.

• Implications for children within the family, and on family planning decisions. Depending on the age at which we become aware of an inherited disease within our family, there may be implications for any children we already have. Counsellors and pastoral support for young people requires additional skills and approaches. Accessing age specific additional support for children under the age of 18 is often best initiated by the schools and colleges they are attending. Many of our members describe reviewing their family planning decisions in light of the news that they are living with, or at risk of a disease-causing gene. The significance and life changing impact of these decisions is not always appreciated by those around us, but it is important to find space to have these important conversations in a supportive and helpful environment.