Living well as a carer

Expert reviewer Versha Sood Mahindra, Dementia Lead, Bupa Care Services
Next review due March 2023

People can live for years after the diagnosis of dementia. This means that you may be the main carer for your loved one for a long time. Therefore, looking after yourself is one of the most important things you can do while you’re caring for someone with dementia. If you’re well and healthy, you’ll be in a better position to support your loved one.

Planning your time

It’s important to plan your time adequately, thinking about different areas of your life, such as:

• self-care
• leisure
• work
• caring

Your time away from your caring responsibilities will help you rejuvenate, feel less stressed and be a better carer. Therefore, it’s important to plan your activities based on your priorities. You can do this by:

• seeking help from other family and friends
• organising respite at home from social services
• organising respite in residential care
• regular carer support, even if it’s just a couple of hours a day

Often, carers feel the responsibility burden heavily and feel guilty for taking a break. But many unplanned admissions into long-term care are because of health issues with the home carer or breakdown from stress.

Taking breaks

“I think it's really difficult, because obviously you want to care for the person that you're looking after, and you always put their needs before your own. But try to have an hour a day that’s to yourself. Whether it be having a bath or reading a book, or even just going to bed early. Just something for yourself, just an hour every day.” – Emily

You may find it hard to make time for yourself. When you do, you may feel guilty. But try not to feel bad for thinking about yourself. If you don’t look after yourself, you may become ill or feel exhausted, and may not be able to look after your loved one.

Taking regular time out may help you to cope. Even a short break, just an hour or two a week, may make you feel much better.

If you get the chance to have a break, think about how you would like to spend your time.

• Try making plans with a friend – or just get some much-needed time alone.
• Spend some time doing a hobby or activity that interests you.
• Do something that helps you unwind. This may be reading, swimming, listening to music or watching your favourite TV programme or film.
• Don’t feel guilty if you just want to have a ‘lazy’ day to recuperate.

See if a friend or relative can come over to spend time with the person you’re caring for, to give you a break. If this isn’t possible, you could look into short-term care options for your loved one. This may include day care or respite care, which are offered by some care homes.

Maintaining a balance between caring responsibilities for someone you love and spending quality time with them can become harder as dementia progresses. Planning on what help you need in advance will help.

Your physical health

No matter how busy you are, don’t forget to look after your physical health. This won’t just help you, but also means you can give your loved one the best care possible.

You can help yourself to keep healthy by:

• eating a well-balanced diet
• doing regular exercise
• getting enough sleep
• having the flu jab if you’re eligible
• getting enough rest and relaxation

Find out what training you can attend. Having knowledge of how to care for someone with dementia can help prevent stress and injury.

If you’re doing a lot of carrying and lifting, you need to take good care of your back. Maintaining good posture, attending any relevant trainings and keeping active may help to prevent, or ease, any aches and pains. Your GP may be able to refer you to a physiotherapist or occupational therapist if you’re having any problems with your back.

You may find it useful to have regular check-ups with your GP. This will mean any health problems, such as high blood pressure, may be picked up early on. It’s natural to carry on working when you have a more minor ailment, such as a cold or upset tummy. But if you feel really unwell, including any dizziness or fainting, see your GP as soon as possible.

Your mental health

Caring for someone with dementia can be mentally draining. It can affect your mood and make you more likely to have anxiety and depression. You may enjoy the challenges that being a carer brings, but it’s also natural to feel angry, sad or guilty at times. Therefore, it’s important to deal with your feelings and look after your mental health. You may find it helps to:

• keep up hobbies and interests that you enjoy
• access support that means you can take some time off from caring
• go to a local carers’ support group (see Asking for help section below)
• ask for help and support when needed, as early as possible, to help prevent stress in the first place
• attend carer support groups

Speak to your GP if you’re finding it difficult to cope with your thoughts or feelings, or if they’re affecting your everyday life.

Relaxation techniques

Finding time to relax may help you to cope better with stressful situations. Try some relaxation techniques, such as:

• deep breathing – sit in a quiet place and take deep breaths until you feel calmer
• muscle relaxation – lie down, shut your eyes and tense then relax the muscles around your body, starting with your toes
• guided imagery – shut your eyes and imagine being somewhere safe and restful

Mindfulness

Mindfulness can make you more aware of how you think and feel in different situations at that particular moment. This should help you to deal with negative thoughts more easily.

Mindfulness has been shown to have benefits for both people with dementia and their carers. You can combine it with everyday activities, such as breathing, eating and walking.

Counselling and CBT

People with dementia can behave in ways that can be very frustrating. They may become suddenly upset or agitated for no obvious reason. It’s easy to get irritated and think they’re being deliberately difficult when it’s really the dementia that’s the cause.

Sometimes, you may need a bit more support. Counselling and talking therapies, such as cognitive behavioural therapy (CBT), may help. Your GP may be able to refer you to a local counsellor or therapist.

CBT can help to ease mild-to-moderate depression in some people. Cognitive reframing is a type of CBT that can help anxiety, stress and depression in carers and boost your quality of life. CBT can help you to change the way you think about difficult situations. You can then learn and practise different ways of responding to them. Counselling can give you a chance to talk about how you’re feeling. There are lots of different types of counselling and talking therapies. It’s important to find a counsellor who understands your situation, and who you can trust and are comfortable with.

There are counselling organisations around the country, and some local care services can offer counselling as well. Admiral Nurses are specialist dementia support nurses whose role is to support carers and families. They can provide a listening ear and should be able to give you information about local services.

Asking for help

“We started attending a dementia cafe once a fortnight. That was really good, because it was a social time for the people who've got dementia, but it was also a good time for us as carers to get together and support each other.” – Emily

Caring for your loved one may gradually get more physically and emotionally demanding as the dementia progresses. Don’t be afraid to ask for help. Doing so may help you to carry on caring for your loved one. Try to accept help if you’re offered it. Or ask a friend or family member to step in, even just for a couple of hours. Having a short break could make all the difference.

You may feel a bit lonely at times if you don’t know any other carers in a similar situation. Going to a local support group may help to boost your mood and wellbeing. You’ll get the chance to share your worries and get advice from people you can relate to. You could also join an online discussion group run by a charity or organisation.

For information about local support groups and online support, contact the Alzheimer’s Society or Carers UK.

Friends and family

It’s important to stay in touch with friends and family. They can help you in a number of ways.

• They may be able to care for your loved one while you take a short break or do other things.
• Popping by for a coffee will give you and the person with dementia the chance to socialise with other people.
• If they’re not living nearby, they may still be able to offer emotional support over the phone or online.

Health and social care services

As a carer, you’re entitled to a carer’s assessment from your local council. This is a chance to discuss your needs and to see whether social services can provide any practical, financial or emotional support. What you’re entitled to and how you arrange a carer’s assessment will depend on where you live in the UK.

Your GP can put you on their Carers Register. This means they’ll make a note of your situation and can give you and your loved one health advice and support if or when you need it. There’s lots of other support for dementia carers so speak to your GP or local council.