LIVING with dementia can have a big emotional, social, psychological and practical impact on a person. Many people with dementia describe these impacts as a series of losses, and adjusting to them is challenging.

This page aims to give people, and carers in particular, a better understanding of what it is like to have dementia. It looks at ways to support someone to live well with the condition. It also looks at how supporting someone with dementia can affect carers.

Supporting a person with dementia

The way a person with dementia feels and experiences life is down to more than just having the condition. There are many other factors aside from the symptoms of dementia that play a huge role in shaping someone’s experience. These include the relationships the person has, their environment and the support they receive.

Personal relationships and someone’s social environment are central to life, regardless of age or mental ability. People can acknowledge this by being as supportive as possible. Carers, friends and family can help a person with dementia to feel valued and included. Support should be sensitive to the person as an individual, and focus on promoting their wellbeing and meeting their needs.

When supporting a person with dementia, it can be helpful for carers to have an understanding of the impact the condition has on that person. This includes understanding how the person might think and feel, as these things will affect how they behave.

The person with dementia may be experiencing a world that is very different to that of the people around them. It will help if the carer offers support while trying to see things from the perspective of the person with dementia, as far as possible.

Each person is unique, with their own life history, personality, likes and dislikes. It is very important to focus on what the person still does have, not on what they may have lost. It is also important to focus on what the person feels rather than what they remember.

Effects of dementia

Dementia may have many effects. Most people experience memory difficulties and problems with thinking. These in turn may lead to the loss of self-esteem, confidence, independence and autonomy, social roles and relationships, the ability to carry out favourite activities or hobbies, and the everyday skills of daily life such as cooking and driving.

Despite all these things being lost, the person will still retain some of their abilities, and will still feel an emotional connection to people and their environment, even later on in the condition.

Dementia will affect a person’s day-to-day life and they may need to adapt how they do things. There are approaches carers can take that can reduce the impact of these practical difficulties and help the person maintain a sense of normality for as long as possible. This will help the person to feel independent and maintain their self-esteem.

People with dementia often experience difficulties communicating - for example, problems with finding the right word or following a conversation. Difficulties with communication may cause a person with dementia to lose confidence or withdraw from social situations. Families, friends and carers may find that these difficulties are frustrating and can increase stress.

Reactions to diagnosis

A diagnosis of dementia can have a huge impact on a person’s life. Someone recently diagnosed with dementia is likely to experience a range of emotions, including grief, loss, anger, shock, fear, disbelief - and even relief. They may feel afraid about the future, scared about moments of confusion and forgetfulness, and upset about the impact dementia has on those around them.

The confirmation of a diagnosis may trigger depression and anxiety in some people. There are a number of talking therapies and, if needed, drug treatments available for depression and anxiety. Lifestyle changes can help too. Those around the person will also have their own emotional reactions to cope with. It is important that both the person with dementia and the people around them feel able to, and are encouraged to, express their feelings.

Some people experience positive reactions when they receive a diagnosis of dementia. They may be relieved to know what is wrong or be glad to be able to plan ahead. Some may use the experience to re-evaluate their situation and focus on the activities and relationships that make them happy.

Dementia may cause people to feel insecure and lose confidence in themselves and their abilities. They may feel they are no longer in control and may not trust their own judgment. They may also experience the effects of stigma and social ‘demotion’ - not being treated the same way by people - as a result of their diagnosis. All of this can have a negative impact on the person’s self-esteem.

Caring for the carers

Family members and friends have to come to terms with the effects dementia has on them and their sense of who they are. They may change from being a partner, friend or child to becoming defined as a carer. This is often a role that is taken on without a conscious decision being made, and many people may not identify themselves as a carer.

Carers of people with dementia often find themselves adapting to constantly changing situations, and they need to cope with both the practical demands of caring and the emotional impact of the person’s dementia. The carer may have to take on more roles and responsibilities. As dementia progresses, there may be fewer opportunities to share meaningful activities with the person with dementia, or a need to do these differently.

Carers often have to balance supporting the person’s emotional needs with their own. This can be very difficult as they are likely to see the situation from different perspectives. They may also benefit from support from professionals and other carers. Family and friends need to offer care and support for carers.