Protect your mental health
While there are many positive aspects of caring, most people also find it physically and mentally demanding. Every carer’s experience is unique and you may find you have good days and bad days. But it’s best to explore ways to cope for the more difficult times.
Managing priorities can be one of the hardest things about caring. You may be juggling it with a demanding job or looking after children. Remember that you are just one person and you can’t do everything. Don’t be too hard on yourself, and try to focus on the most important aspects of caring if you find yourself feeling overwhelmed.
Many carers struggle with difficult emotions such as frustration, guilt and resentment. Do seek support from your GP if these feelings are really affecting your daily life.
You may find local support groups in your area will help you feel less alone, as you’ll be able to chat to people in a similar situation. Many charities also have a dedicated helpline such as the Alzheimer’s Society, National Dementia Helpline and Carers UK.
Money worries can also take their toll if you’re caring for somebody, so make sure you claim any benefits you are eligible for, including Carer’s Allowance.
Dealing with behaviour changes
As dementia is a progressive disease, the person’s needs and symptoms will change over time. It can be extremely difficult to see someone you love struggling with things they used to do easily. It’s important to focus on what they can still do and the activities they find enjoyable.
Behaviour changes may include:
- Repetitive behaviour: for example, carrying out the same gesture or activity or asking the same question repeatedly.
- Restlessness: such as pacing up and down or fidgeting.
- Lack of inhibition: Confusion might cause some people with dementia to behave in a way that others find embarrassing, such as undressing in public, swearing, making inappropriate comments or exhibiting sexual behaviour.
- Night-time waking: dementia can cause people to become restless at night and find it difficult to sleep. It can affect people’s body clocks so that they may get up in the night, get dressed or even go outside.
- Trailing and checking: dementia can make people insecure and anxious, so they may follow carers or loved ones to check where they are.
- Losing things: people with dementia sometimes put things away and then forget where they are – or forget that they put them away in the first place.
- Paranoia: some people with dementia can become suspicious and paranoid. For example, if they have mislaid an object they may accuse someone of stealing it, or they might imagine that a close friend or family member is out to get them.
Talking to the health professional involved in your loved one’s care can really help you deal with the changes. Having the support of your local mental health team is important when behaviour becomes distressing to the person and their family and friends.
And try to remember that it is the illness, not the person, that is making them act this way. All behaviour, however unusual, can be a means of communication. For example: trying to undress could mean that they’re hot or need to go to the toilet; pacing up and down may mean that they need more exercise; and becoming agitated may mean that they’re uncomfortable in an unfamiliar, loud or busy environment. Step away from the situation for a minute and look at your loved one’s body language to try and understand what they might be feeling.
If your loved one becomes agitated, try to validate their feelings first. Being in an unfamiliar setting or doing new things might make them more agitated. Soothing activities, such as speaking in a gentle voice, watching a favourite TV programme, having a gentle massage or listening to their favourite music might help them to feel better.
Unusual behaviours, particularly repetitive behaviour, can be very irritating. If you find the person’s behaviour difficult to deal with, step out of the room for a while or explore alternative care options that will allow you to take a break, such as respite care, day care centres or specific clubs for people with dementia.
Depression and dementia
It’s quite common for people with dementia to experience low moods, anger, frustration and even depression. This can be a symptom of the condition and the changes it’s making to their brain, or simply a natural consequence of being diagnosed.
It can help for your loved one to talk to someone – a family member, friend or a support group. If you suspect that they’re experiencing severe or clinical depression, ask them to speak to their GP who may refer them to a trained counsellor or prescribe medication.
Talking to someone with dementia
Most forms of dementia, at some time during the progression of the condition, affect a person’s ability to express themselves in some way. For example, someone with dementia might experience difficulties finding the right words or be too confused to get their point across. But the most important thing to remember is that they are still the same person that you've always known.
Effective communication is a two-way street, it’s not just about expressing yourself clearly but listening, too. Give your family member or friend time and space to express their feelings.
- Involve your loved one in conversations, both with yourself and others.
- Take time to think about what you say, and how you say it. Your words and tone of voice are both important.
- Avoid speaking sharply or raising your voice, as this may cause distress.
- Speak slowly and clearly, using short, simple sentences.
- Try to get their full attention before speaking. It will probably help to minimise external noises, which could interrupt or distract from the conversation, such as the radio or television.
- Try different ways to get your point across rather than repeating the same thing over again. Rephrase and reword your points.
- Be a good listener. When your loved one talks to you, give them your full attention so they know that you’re listening.
- Tell them what you have understood and check with them to see if you’re right.
- Talk about them as if they weren’t there. Being included in social groups can help a person with dementia to preserve their sense of identity. It can also help to reduce feelings of exclusion and isolation.
- Expect them to respond quickly to questions. Don’t put pressure on them to answer quickly, as they could become frustrated or upset if they don’t know the answer.
- Interrupt or finish sentences for them, even if you think you know what they’re trying to say. It’s important that they can express themselves.
- Dismiss their problem. They might sometimes feel unhappy and frustrated, and might just want someone to listen to how they feel.
Planning for the future
If you suspect that a family member or friend has dementia, encourage them to see their GP as soon as possible about diagnosing dementia. This will help you both to decide on the best course of action and make it easier to plan for the future.
If caring for the person is becoming too much, it might be worth looking into professional care services, such as home care.
If your loved one already has a dementia diagnosis and is displaying signs of confusion or memory loss, it may not be possible for them to make some long-term decisions. This might particularly apply to finances, accommodation or health. This is when it can be difficult making decisions on behalf of that person.
Hopefully, they will have already put a Power of Attorney in place. A legally appointed attorney is required to always act in that person’s best interests, which is what you would want anyway.
Depending on the decisions that need to be made, you might need to consult other people in your loved one’s support network. For example, you might want to ask advice from other family members, their social worker, doctor, solicitor or financial adviser.
More real-life stories
Find more real-life stories related to different stages of caring
We explain how to spot the signs of dementia and the main types, including Alzheimer’s and vascular dementia.
Memory loss may be due to natural ageing or a sign of something more serious, such as a dementia-related illness.
Memory gadgets can help people with dementia, Alzheimer’s or memory loss to stay safer and more independent at home.