5. Coping with dementia
As the condition progresses, each person will find their own way of coping with, and reacting and adapting to, the changes that dementia brings. Developing these coping strategies can be a gradual and subconscious process.
Coping strategies may include:
- practical strategies - eg setting up reminders or prompts, preparing advance decisions or a Lasting Power of Attorney for the future
- social strategies - eg relying on family help, seeking spiritual support, joining new activity groups
- emotional strategies - eg using humour, focusing on short-term pleasure or living for the moment, focusing on positive aspects
- health improvement strategies - eg exercising more, adopting a healthier diet, cutting down on alcohol or smoking.
If a carer understands the person's coping strategies, they will be able to support them better.
Responses to dementia
The way a person reacts to dementia, and the ways they adapt and cope with the condition, will be influenced by a range of factors. These include their personality, their previous experiences, their understanding of dementia, the social and emotional support they receive, and their environment. People will react differently and may adopt different strategies at different times.
Some people may not acknowledge that they have dementia or deny that they are experiencing difficulties. Others may be aware that things are becoming harder but feel that it is a normal part of aging rather than part of dementia. It is important to understand that these responses may be a person's way of making time and space to accept a diagnosis of dementia.
As dementia progresses, people may become less aware of the condition and its effects on their abilities. This is more likely in the later stages of the disease, but it can develop earlier on in people with certain types of dementia (eg frontotemporal dementia). It is important for carers and others to understand that people who lack this awareness will not realise their abilities or behaviour has changed.
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 in people's abilities caused by dementia, however, may lead to changes in their sense of identity. It is important that the people around the person with dementia are aware of this as they are able to influence how the person sees themselves. They should try to treat the person with dementia as an individual, and value them as such, rather than defining them by the condition or focusing on negative aspects such as lost abilities.
Changes in behaviour
People with dementia often behave differently as their condition progresses. They 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.
Rather than just being a symptom of the dementia, these out-of-character behaviours can occur because the person has a need that isn't being met or they can't communicate. The behaviour will have meaning to the person. They might be in pain, be thirsty or hungry; maybe they misunderstood something or someone and feel threatened; or perhaps they are frustrated or under-stimulated.
It is important to look at why the person is behaving this way and try to identify which needs are not being met. This will mean trying to see things from their perspective as much as possible. Meeting a person's needs appropriately can make these behaviours easier to cope with, or prevent them from happening in the first place. For more information see our page: Changes in behaviour.
Relationships, roles and responsibilities
Our relationships with the people around us 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 fear not knowing how to react to them.
Carers can help by supporting existing relationships and encouraging continued participation in social groups, community activities, religious activities and hobbies. Dementia cafés provide an opportunity to meet other people, talk about living with dementia and participate in group activities in an informal social environment. The GP surgery, local library or council office will also have information about other social groups.
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. It is geared towards empowering people with dementia to feel confident, knowing that they can contribute to their community and participate in activities that are meaningful to them. Carers can do this by involving people with dementia in their own social groups, informing others (eg shopkeepers, local business and neighbours) about the nature of dementia, and challenging mistaken ideas or fear of dementia if, or when, it occurs.
Dementia may also change the relationships between the person and those closest to them, who may find they have taken on the identity of a 'carer'. A carer may find they have an increasing number of roles in the 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.
As the 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 from the relationship (eg mutual affection) will remain. Carers and those around the person with dementia may find it helpful to focus on these positive aspects.
A healthy relationship between the person with dementia and the carer can be an important factor in making sure the person has a good quality of life. Finding ways to maintain the relationship - for example, things such as accessing replacement/respite care that reduce the stress that carers experience - may help. It is important for a carer to balance their own wellbeing with that of the person with dementia. 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.
Maintaining a positive relationship with the person with dementia: tips for carers
- 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 (including 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 (eg 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 (eg counsellor).