Ways to help care for the carer
With most people who have dementia living at home, and many other people with special needs in the family setting, it's vital that carers look after themselves
The number of people with dementia in Northern Ireland is around 20,000, with this number expected to rise substantially in upcoming years. The majority of people with dementia live at home in the community, often cared for by a partner or family member.
It is a crucial, challenging - and potentially debilitating - role, and carers must prioritise self-care.
1. Realise that caring for yourself is vital to your loved one's health
"Becoming a caregiver has an emotional, physical and sometimes financial impact," explains Samantha Taylor, from The Alzheimer Society of Ireland. "When you take care of yourself, everyone benefits - if you don't, you may experience high levels of stress, anxiety, exhaustion and depression," she warns.
"Dementia is progressive, so care needs to change and increase over time, and unfortunately there's currently no cure. For most people, progression is gradual so we get time to adapt, but it also means carers are often caring for many years."
2. Read the research
The De-Stress study, which was carried out last year by researchers at Trinity College, Dublin, revealed that depression and anxiety were common among family carers. Other research, conducted by the Royal College of Psychiatry and the Carers Association showed higher levels of depression and anxiety among carers than their peers who are non-carers. More than 50% of carers surveyed had a significant mental health problem in this 2009 report. It also showed that women who spend nine hours or more caring per week double their risk of heart disease, while elderly carers, aged 66-96, who experience care-related stress, have a 63% higher mortality rate than non-carers.
3. Make a conscious decision to look after yourself
"We have found, over the years, that for many family carers it is instinctive to look after someone you love, but that looking after yourself is not automatic," says Taylor. "It is something you have to make a conscious decision to do," she states, adding that when a caregiver is 'building in' support services and networks, he or she also needs to think about building in the necessary supports to allow them time away from caring. Often, we have to make a decision to do this. Nobody else can make that decision for you but, once you do, people can help and support you. Everyone benefits when a caregiver is looking after themselves: it is good for you, good for your loved one with dementia and good for your family."
4. Be mindful of your psychological health and wellbeing
"If you're not aware of, and don't prioritise, your own mental health and wellbeing, you run the risk of burnout or meltdown," warns Catherine Cox, at Family Carers. "We have dealt with carers who have reached burnout stage because they didn't take the time to look after their own health and wellbeing, because their focus was 100% on the person they were caring for." This is a big risk for carers, she says.
5. Write down five things that make you happy - and try to do one each day
Walk, run, exercise, listen to music or treat yourself to therapy, suggests Cox. "This is about continuing to do the things in your life that you enjoy, and ensuring you do at least one of these things every day."
If you don't, she says, you will end up focusing on the negative stresses and challenges in your life. Get in the habit of allocating 10 minutes to yourself every morning and night for 'you time': meditate, do yoga, listen to music or whatever you enjoy.
6. Learn to recognise warning signs
Try to reduce personal stress by recognising warning signs such as feelings of anxiety or panic, disrupted sleep, irritability, loss of appetite or tearfulness, urges Cox. "Recognise the sources of your stress - perhaps it's adult siblings who won't engage in the care of a parent, the intensity of the caring role or a lack of support in terms of service providers. Recognise what you can and cannot change: what you have control over and what you don't."
7. Be prepared to ask for, and to accept, help
Some carers feel they have to do everything themselves, because they believe they are best at the caring role and fear that someone else might not be able to do things as well. However, says Cox, it's important to accept that while someone else might not be as good at caring as you, they will still be able to keep the ship afloat while you take a necessary break. So don't be shy about seeking help from family, friends and health professionals.
8. Acknowledge your emotions
Lots of carers talk about experiencing a real sense of reward from what they do, says Taylor. "Many carers are very involved and very happy in their roles," she says, adding that not everyone feels like that all the time, though: "Some people may feel resentful or totally overwhelmed. There will be days when you feel fed up, guilty, angry or resentful. This is okay."
Being able to pick up your phone and vent to somebody who will understand is very important, she emphasises. Joining a carers' support group will provide a safe environment in which to express how you are feeling: "It is an environment with like-minded people; it is a safe place to talk about the difficult emotions that you are feeling in the knowledge that others will have felt that way."
9. Learn about, and link into, available supports
Acknowledge you will need different types of help at different times, advises Taylor.
"You can build a support network by talking to family, friends, health and social care professionals and by accessing supports and services such as dementia advisers, family carer education courses, social clubs, support groups, day care, home care and respite care."
Make a point of joining and attending carers' groups, which can provide much-needed peer support.
Cox suggests: "You can share your feelings and frustrations with someone who is going through the same experience as you. "These are very safe and non-judgemental environments in which to share your experiences and your feelings."
10. Eat well, rest where possible and exercise regularly
This might sound obvious, says Cox, but many carers neglect these basic human needs: "We have found that carers are so busy catering for the needs of a loved one that they often ignore their own nutritional needs. "They may skip lunch or dinner because they're so busy. They may prepare a very nutritious meal for a loved one but forget to eat themselves, which affects both physical and mental health."
Carers are often time-poor, but where possible, she advises, try to rest, even if it is at the same time the cared-for person goes for a nap:
"Try to avoid the temptation to rush around the house catching up on things." We know that a 20-minute daily walk is good for keeping the heart and body healthy and also contributes to weight control," explains Cox. Exercise is also an important de-stressor, allowing you to switch off from caring and from the stresses and challenges involved in the caring role.
11. Attend regular health checks
Check in regularly with your GP. "This is a crucial preventive measure for carers, who are under so much stress," says Cox, adding that the association feels this is so important that it has - unsuccessfully - campaigned for free annual medical check-ups for all family carers. Carers under pressure - financial, physical or psychological - will ignore their own health needs.
12. Stay connected
Caring can be quite isolating, and carers often find they lose friends because of the intensity of the role," says Cox. It's important to stay connected, she says, whether through face-to-face or virtual contact: "Caring is often a 24/7 role and carers may not have the time to get out and socialise, and they risk becoming cut off from the outside world. It's very important to stay connected with others and it can be done face to face, or through phone, email, Skype or through social media. Carer support groups are a good way of doing this too."
13. Establish a routine
Having a sense of how your day and week will go allows you to plan ahead and to look forward to things that you and your loved one enjoy. It also allows family, friends and healthcare professionals to plan with you how they can help. People with dementia find routine helps them manage daily life. There will be times when routines go out the window, but in the main they are really useful. Having a pattern helps a person dealing with cognitive impairment and memory loss, says Taylor. For the carer, a routine also provides structure and support.
14. Consider doing some legal and financial planning
It may be the last thing you want to do, but putting your legal and financial affairs - and those of the person with dementia -in order can alleviate worry and stress, urges Taylor. "Many people talk about the relief of knowing things are sorted out. Others are able to access financial support, for example a carer's allowance."
15. Remember: Nobody's Perfect!
There will be days when it feels that everything you do is wrong. Try to focus on the positive; remind yourself of what is going well. Take one day at a time, or even one hour at a time if you are having a bad day. Have things that help you reconnect with positive thoughts - a favourite song, movie, a chat with an old friend or a book you love. Get out for a walk, even in the garden. Practise mindfulness or yoga or dance... whatever works for you.
The Alzheimer's Society Northern Ireland, tel 028 9066 4100, visit alzheimers.org.uk. National Dementia Helpline, tel 0300 222 11 22. Carers UK, tel: 028 9043 9843, visit carersuk.org/northernireland Alzheimer's Research UK, tel: 0300 111 5555 for a dementia caring booklet