Understanding and supporting a person with dementia
Gaining a better understanding of what it is like to live with dementia can help you support someone with the condition to live well. We cover topics such as identity, changes in behaviour, and the practical impact of dementia on the individual and carer.
Understanding and supporting someone with dementia
The way a person with dementia feels and experiences life is down to more than just having the condition. Their relationships, environment and support all shape their experience too. Carers, friends and family can help the person with dementia to feel valued and included.
How to help someone with dementia
Support should be sensitive to the person as an individual. This is called person-centred care. Support should also focus on promoting their wellbeing and meeting their needs. It's important to focus on what the person still does have, not on what they may have lost. Concentrate on what the person feels, rather than what they remember.
The person with dementia may be experiencing a world that is very different to that of the people around them. To understand and support the person, try and see things from their perspective and recognise their coping strategies.
Coping strategies a person with dementia might use
- Practical strategies – setting up reminders or prompts, preparing advanced decisions or a lasting power of attorney for the future
- Social strategies – relying on family help, seeking spiritual support, joining new activity groups
- Emotional strategies – using humour, focusing on short-term pleasure or living for the moment, focusing on positive aspects
- Health improvement strategies – exercising more, adopting a healthier diet, cutting down on alcohol and smoking
Responses to dementia
The way a person reacts to dementia will depend on their personality, their previous experiences, their understanding of dementia, the social and emotional support they receive, and their environment. People may adopt different coping strategies at different times.
Some people may not acknowledge that they have dementia. They may deny that they are experiencing difficulties. Others may be aware that things are becoming harder but feel that is a normal part of ageing rather than part of dementia.
A person's sense of identity – who they think of themselves as – is shaped by many things, including their relationships, roles in the family and community, hobbies and occupation. For example, a person may identify themselves as a keen gardener.
Changes caused by dementia may lead to changes in their sense of identity. It is important that family, friends and carers are aware of this because they are able to influence how a person with dementia sees themselves. They should try to treat the person with dementia as an individual rather than defining them by the condition or focusing on negative aspects such as lost abilities.
For anyone receiving professional care, This is me is a leaflet that can be used to record details about identity.
Changes in behaviour
As their condition progresses, a person with dementia may start to behave in ways that are challenging and distressing, both for themselves and those around them. For example, a person with dementia may:
- become restless or agitated
- shout out or scream
- become suspicious of others
- follow someone around
- ask the same question repeatedly.
These out-of-character behaviours can occur because the person has a need that isn't being met and they cannot communicate it. For example:
- they might be thirsty, hungry or in pain
- they may have misunderstood something and feel threatened
- they may be frustrated or bored.
Relationships, roles and responsibilities
Relationships form a central part of our identity. Relationships often change when someone has dementia. People with dementia can easily become isolated or avoided by those around them. They may lose contact with friends and family, who may not know how to react to them.
As dementia progresses, some aspects of the relationship may become harder, such as the ability of a person with dementia to support those around them. However, many positive elements of the relationship (such as affection) will remain. Carers and those around the person with dementia may find it helpful to focus on these positive aspects.
Carers can help by supporting existing relationships and encouraging the person with dementia to join social groups, community activities, religious activities or hobbies. Dementia cafés provide an opportunity to meet other people, talk about living with dementia and take part in group activities. The GP surgery, local library or council office will also have information about other social groups.
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Carers and others can also help in creating a dementia-friendly community. This is a community in which local people have an understanding of dementia, which empowers people with dementia to feel confident and be able to contribute to their community.
Carers: looking after yourself
Dementia may also change the relationships between the person and those closest to them. A partner, friend or child may find themselves 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 think of themselves as a carer.
A carer may find they have an increasing number of roles in a relationship. While taking on more responsibility may be necessary, it is important that the person with dementia continues to feel involved with, and able to contribute to, the relationship.
Carers often have to balance supporting the person's emotional needs with their own. For example, accessing replacement/respite care may help. A person with dementia may feel confused, anxious or isolated if their usual carer is temporarily replaced by respite care, but it is equally important for carers to have time to rest and recuperate.
The impact of dementia on the individual
Most people living with dementia experience problems with their memory and thinking. This can lead to loss of:
- Self-esteem and confidence
- Social roles and relationships
- The ability to carry out hobbies
- Everyday life skills (for example, cooking and driving)
However, the person will still keep some of their abilities. They 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. There are approaches carers can take to lessen the impact of any changes and help the person keep a sense of normality for as long as possible.
People with dementia often experience difficulties communicating – for example, problems with finding the right word or following a conversation. Other factors that may affect communication include pain, other conditions, side effects of medication and sensory impairments.
Tips for carers on communication:
- If the person finds speech difficult, speak slightly more slowly and use simple words and sentences.
- A person with dementia may use their behaviour and body language to communicate, such as gestures, eye contact and facial expressions.
- Try to maintain eye contact. This will help the person focus on you.
- Try to avoid sudden movements and tense facial expressions, as these may cause upset or distress.
- Try not to stand too close or stand over someone when talking – it may be intimidating.
- Make sure the person is included in conversations. Try not to speak on their behalf, complete their sentences or allow others to exclude them.
- Listen to the person. Give them plenty of time, remove distractions like background noise. They may be trying to communicate feelings, not just facts.
- Avoid asking too many questions. Consider giving options or asking yes or no questions.
We have more advice on how to communicate with a person with dementia.
Where possible, it is important that families, friends and carers support the person with dementia to do things for themselves rather than 'taking over'. This increases the person's wellbeing and helps maintain their dignity, confidence and self-esteem.
Carers and others should avoid assuming the person isn't able to contribute or understand what is happening. It is important for the person to be involved as much as possible. This can mean enabling the person with dementia to do things their way, within reason.
However, carers will need to balance independence against safety concerns.
Tips for carers on maintaining independence
- Do things together – try to do things with the person, rather than for them.
- Focus on the things the person can do, rather than those they can't.
- Allow plenty of time for tasks and offer reassurance and encouragement if needed.
- Break down tasks into smaller steps.
- Focus on the process of a task rather than the completion.
My Life, My Goals
My Life, My Goals is a free self-help guide for people in the early stages of dementia, providing a focus on feeling more confident and in control.
Maintaining a positive relationship
A healthy relationship between carer and the person with dementia is an important factor in making sure the person has a good quality of life. It is important to find ways of maintaining the relationship.
Tips for carers on relationships
- Try to focus on the relationship as it is now, rather than thinking of how it used to be.
- Consider ways to support the relationship, such as life story work, reminiscence, creative activities (such as art and music) and shared hobbies.
- If there are long-standing difficulties in the relationship, try to find opportunities to spend time apart, or consider other social support (for example, a carers' support group or online forum). You could also consider counselling and relationship support.
- Don't be afraid to talk to people about the changes in the relationship – this could be a friend, family member or professional (such as a counsellor).
A person's ability to make decisions for themselves is called 'mental capacity' (often just 'capacity'). It means being able to weigh up different options, decide on one and communicate the decision.
A person with dementia may eventually lose capacity to make certain decisions (for example, choices about finances), but it should always be assumed that a person has capacity unless it can be shown otherwise.
Any decision made for a person with dementia must be in their best interests. The decisions should take the least restrictive option and be based on the person's previously expressed wishes. For more information, see our page on the Mental Capacity Act 2005.
Dementia Support Line
Dementia Support Forum
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