Caring for someone with dementia
Looking after a friend or relative who has dementia is often very challenging. It’s as important to look after your own health, as it is that of the person with dementia.
What support is available to me?
When you’re caring for someone else, it can be easy to overlook your own needs. But looking after your health and making time for yourself can help you feel better and more able to cope with your caring role.
Caring for someone with dementia can lead to feelings of guilt, sadness, confusion or anger. Unlike other conditions, it can be difficult to share these feelings with someone with dementia, leaving you feeling very isolated.
It’s important to acknowledge these feelings and to remember that there’s no right or wrong way to feel. If you’re feeling anxious or low or you’re struggling to cope, talk to your doctor who can let you know about the help and support available to you.
Carers’ groups
Carers’ groups can be a good way to get support from other carers who understand what you’re going through and can share their own experiences. Most groups meet regularly and may include talks from speakers, leisure activities, trips and some time to just sit and chat.
Ask your dementia adviser or social services about local groups or contact the following:
Online groups
Online groups can also be a great source of support, especially if you can’t get out or if you need someone to talk to when no-one else is around.
Memory cafes
Memory cafes also offer information and support in an informal setting where people with dementia and their carers can attend together. There are often professional carers available to talk to in confidence.
To find out about local memory cafes, ask your dementia adviser, local Age UK or Alzheimer’s Society.
Day centres
Some carers feel mixed emotions about day centres, but a variation in routine can benefit you both and allow you to have some time to yourself. There are some specialist dementia day care centres, while others may cater for people with mild dementia.
Day care can be difficult at first for the person with dementia to get used to. Talk to the staff if they seem upset or unhappy about going. Different day centres offer different activities and environments – you may find the person’s social and cultural needs are better met by a different one.
How do I manage financial and legal issues?
Making decisions for their future while they still have mental capacity can help someone with dementia remain in control and feel more confident. It can also help you, as a carer, to feel reassured that plans are in place for the future.
Managing money
If the person with dementia is still able to manage basic finances, they may wish to set up direct debits to pay regular household bills. If they prefer not to do this, contact their fuel companies to let them know the person has dementia and give them an alternative contact number so the person isn’t suddenly cut off if they forget to pay their bills.
If the person with dementia handled all the money matters for the household you may be finding it daunting to deal with all the finances for the first time. Start by finding all the important documents, such as bank statements, insurance policies, wills and pension details, and putting them in a safe place.
The person with dementia could also set up a third-party mandate to give you permission to manage their bank account on their behalf.
Planning for the future
- Talk to the person with dementia to make sure that they have a current up-to-date will that reflects their wishes.
- Encourage the person with dementia to set up a Lasting Power of Attorney(LPA) so that a responsible person can make decisions on their behalf when they are no longer able to.
- Talk to the person with dementia about making an advance decision to refuse certain types of medical treatment in certain situations. It will only be used when the person with dementia has lost the capacity to make or communicate the decision in the future.
- If the person you’re caring for has already lost the ability to make or communicate decisions but doesn’t have an LPA, you can apply to the Court of Protection who can make decisions on behalf of that person or appoint someone else (a deputy) to do so.
If the person you care for drives, the law requires them to tell DVLA about their diagnosis. A diagnosis of dementia doesn’t automatically mean someone has to stop driving straight away – what matters is that they can drive safely. Talking to the person you care for about stopping driving can be very sensitive.
Carer’s checklist
Not sure where to start? Our checklist gives helpful tips to make sure you get the support and information you need as a carer.
How can I support someone as their dementia progresses?
In the later-stages of dementia the person may become increasingly dependent on others for their care.
They may have severe memory loss at this stage and fail to recognise those close to them. They may lose weight (especially if chewing and swallowing are difficult), lose their ability to walk, become incontinent, and behave in unusual ways.
Not everyone will show all these signs, and some people may show them earlier on in the illness.
Going into hospital
If the person you care for has to be admitted to hospital, this can be disorientating for them.
You can help by asking for the named nurse who is responsible for co-ordinating the person’s care as an inpatient. Tell them and other staff that the person has dementia and ask to be kept informed and involved in decision making.
It can help to write down important facts about the person and give them to the named nurse. For example, it can be useful to include details of how the person prefers to be addressed, their likes and dislikes, such as whether they prefer a bath or a shower, and the practical help they need.
Alzheimer’s Society have a leaflet called This is me which gives you space to write about the person’s hobbies and interests, things that may upset them, their personal care and mobility, sleep patterns and other relevant information.
Moving to a care home
If the person’s needs become too great for you to manage at home, you may need to consider other long-term options. If you’re becoming exhausted or the person with dementia is becoming harder to care for, a care home can be the best option for you both.
A move to a care home can be a difficult decision, but there are limits to the care you can provide.
If the person you care for is moving into a care home, familiar furniture, belongings or music can help them feel more settled.
Read more about choosing and paying for a care home
End of life care
People often experience a gradual, long-term decline in their condition, so it can be difficult to clearly recognise when they are approaching the end of their life.
The best thing you can do is to ensure that their GP, medical staff and any care home staff know what plans they have put in place about their future care.
And if you’re caring for the person with dementia at home, make sure you speak to your GP about local services available to help you as their condition deteriorates.
When someone develops dementia, you may experience feelings of grief and bereavement as the illness progresses. When they die you may find that you have already grieved so much that you have no strong emotions, or you may feel overwhelmed by the loss. Whatever you’re feeling is quite normal.
- You might like to read about coping with bereavement
- visit the Talking Point forum on the Alzheimer’s Society website
What’s the best way to communicate with someone who has dementia?
As dementia progresses, it affects people’s ability to express themselves – so you may need to learn new ways to understand and communicate with the person you care for. Here are some tips:
- If they don’t seem to be making sense, try to look for the meaning behind their words.
- Speak slowly and clearly, using simple language and short sentences.
- Avoid offering them complex choices – keep things simple with questions that only need a ‘yes’ or ‘no’ answer.
- Avoid testing their memory by asking them about what they’ve been doing. Try not to get into arguments about what they say – even if you think they’re mistaken. Simply listening to what they’re saying rather than correcting them can help someone feel acknowledged.
- Create a memory book to help them remember special times. This could be a collection of photos that represent happy events like weddings, holidays, or the birth of children. Memory books can help health and social care professionals understand the person, too.
If you’re struggling with unusual or challenging behaviour, speak to the person’s GP to get a referral to your community mental health team.
The Alzheimer Society’s factsheet Aggressive behaviour has more useful information
It’s worth bearing in mind that distress and confusion may be caused by health needs other than dementia. Always discuss any concerns with the person’s GP so that they can check for physical causes of symptoms.
If they use them, it’s also a good idea to check that the person’s glasses are clean and that their hearing aid is working.