Caring for someone with dementia
Looking after a friend or relative who has dementia is often very challenging. But it's just as important to look after your own health.
What support is available for me if I care for someone with dementia?
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 with 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 depressed, 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 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 offer speakers, leisure activities, trips and simply time to sit and chat.
Online groups can 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.
You might like to take a look at the following groups:
Memory cafes offer information and support in an informal setting where people with dementia and their carers can attend together. There are often professional carers available for you to talk to in confidence.
To find out about local memory cafes, ask your dementia adviser, local Age UK or Alzheimer's Society.
Some carers feel unsure about day centres – but a variation in routine can allow you some time to yourself and benefit both you and the person you care for. Some day care centres are suitable for those with mild dementia, while some provide a specialist dementia service.
At first, day care can be difficult 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.
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.
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?
As a person's dementia reaches its later stages, they become increasingly dependent on others for their care.
They may have severe memory loss and no longer 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 name of someone to contact with any questions or concerns about the person's care. 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 staff – for example, how the person prefers to be addressed, their likes and dislikes, and the practical help they need.
Alzheimer’s Society's leaflet This is me gives you space to write about the person’s hobbies and interests, things that may upset them, their personal care and mobility requirements, 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 might 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.
End of life care
People with dementia often experience a gradual, long-term decline, 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 progresses.
When someone has dementia, you may experience feelings of grief and bereavement as the illness progresses. When they die, you may find that you've already grieved so much that you have no strong emotions – or you may feel overwhelmed by the loss. However you're feeling, it's important to recognise that it's normal.
How 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 including how to react, working out triggers, and dealing with your own feelings.
It's worth bearing in mind that distress and confusion may be caused by other health needs than dementia. Always discuss any concerns with the person's GP so they can check for physical causes of symptoms.
It's a good idea to check that the person’s glasses are clean and their hearing aid is working, if they use them.
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We offer support through our free advice line on 0800 678 1602. Lines are open 8am-7pm, 365 days a year. We also have specialist advisers at over 140 local Age UKs.
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