Dementia - taking care of carers

The physical and emotional demands of caring for someone with dementia can be high. As the amount of care needed increases, more time and energy is required from the carer.

If you are caring for a person with dementia, you need to look after yourself, or the demands may wear you down. When you are worn down, caring becomes even harder, and it is not easy to keep balancing your own needs with those of your family and the person with dementia.

You need support to care for someone with dementia#

Many people find comfort and practical help by attending meetings with others who understand what it is like to care for a person with dementia. Carer support groups bring together families, carers and friends under the guidance of a facilitator, who is usually a health professional or someone with firsthand caring experience. Local support and advisory organisations can tell you more about what is available in your area.

Managing stress#

Managing stress improves your wellbeing and can help in your caring role, so it is worth learning some better ways to cope. Bookshops and libraries offer a range of material on different approaches to stress. Some suggestions include:

• keep a consistent daily schedule, which can make life easier when living with a person with dementia
• remember that the person with dementia is not being difficult on purpose; their behaviour and emotions are affected by the illness
• learn as much as you can about dementia, and encourage friends and relatives to do the same
• talk things over with family, friends and others in a similar situation
• look after your diet, get regular exercise, and maintain your social contacts and lifestyle
• be realistic about what you can expect of yourself, and recognise that you will be a better carer if you take care of yourself

Keep doing the things you enjoy#

It is very important to continue with activities you enjoy. Some carers feel guilty when they leave the house or do something without the person they care for, yet carers have every right to follow their own interests outside their caring role. In fact, it is essential that they do, because a carer who has regular time away will be a better carer.

If you struggle with guilt about getting out, it may help to talk it over with a supportive friend or relative, your doctor or a counsellor.

Asking for help#

You can take care of yourself by being open about what help you need now, and planning ahead for what you may need in future. Help often comes from relatives, friends and neighbours, but not always. Seeking outside help is also important, and doctors, psychologists, social workers and counsellors all have experience supporting people who care for others.

Some suggestions include:

• aim to share the care of the person with dementia, and do not hesitate to ask
• suggest specific ways friends and relatives can help, such as bringing a meal or helping with housework or shopping
• organise regular breaks, which is very important
• ask whether some friends or relatives can care for the person on a regular basis
• find out whether local day centres offer suitable programs for people with dementia and respite for carers

Communicating with friends and relatives#

A lack of understanding from other people can make caring harder. Helping friends and relatives understand what is happening may make your role easier. Some suggestions include:

• explain that although a person with dementia may look fine, they have an illness that is devastating but not contagious
• accept that some friends may drift away
• ask visitors to come for short visits, and avoid having too many people at one time
• suggest that visitors come prepared with an activity, such as bringing a snack, going for a walk, doing a simple project together or looking at a photo album
• prepare visitors for communication difficulties and suggest ways they might handle them

Men caring for a person with dementia#

Many men find themselves caring for a person with dementia, most often a partner, although they may also be caring for a parent, sibling or friend. In many homes one person has taken the main responsibility for meal planning, cooking, cleaning, laundry and other tasks that keep a household running. As dementia progresses, that person gradually becomes unable to do these tasks.

The carer may need to begin taking them on, perhaps by asking the person to show them how things are done, which for some means learning new skills. Some of the issues men may face include:

• helping with personal and intimate care, such as bathing and toileting
• helping with tasks such as applying make-up, putting on tights or arranging hairdressing
• keeping up friendships and family contacts, so it is important to make sure they have both social and emotional support

Common feelings experienced by carers#

As a carer, you are likely to experience a range of strong and often extreme feelings. This is especially hard because, as dementia gradually changes the person’s abilities and personality, the nature of your relationship also changes. There is no simple way to deal with these feelings, but it may help to know that complex, shifting emotions are completely normal. Common feelings include distress, frustration, guilt, grief and loss, exhaustion, annoyance and anger.

Guilt#

It is common to feel guilty about things such as not wanting the responsibility of caring, embarrassment about the person’s behaviour, the way the person was treated in the past, or losing your temper. If the person moves into hospital or residential care, carers may feel guilty for not keeping them at home longer, even when everything possible has been done. You may also feel guilty about past promises that can no longer be kept, such as “I’ll always look after you”.

Grief and loss#

Grief is an emotional response to loss, such as the loss of a relationship, good health or a person. When someone close develops dementia, you face the loss of the person you used to know and of your relationship with them. People caring for partners are also likely to grieve the future they had planned together. Grief is very individual, and people feel it differently at different times.

Anger#

It is natural to feel frustrated and angry. You may feel angry at having to be the carer, at others who do not seem to help, at the person with dementia for difficult behaviour, or at support services. Sometimes you may even feel like shaking, pushing or hitting the person. These feelings are normal, but if you feel you are losing control, it may help to talk to your doctor or a counsellor.

Coping with your feelings#

Some helpful tips for dealing with guilt, loss and anger include:

• allow yourself to really feel what you are feeling; denying it only intensifies and prolongs the pain
• cry if you need to, as tears can be therapeutic
• talk and share the pain, which can help diminish grief; it can be helpful to talk to someone outside the family, such as a counsellor
• keep a journal, a private place to write down unfulfilled wishes, guilt, anger or any other thoughts and feelings
• try not to be engulfed by bitterness
• find comfort in whatever way works for you, such as prayer, meditation or other activities
• hold off on major decisions, tread carefully and explore all options before taking big steps
• be kind and patient with yourself, find a balance between the happy and sad, the angry and peaceful, and learn to laugh and rediscover your sense of humour

Finding joy in life can be one way to honour the happy times you used to share with the person you care for.

Taking a break#

Make sure you get adequate breaks from caring so you do not become worn down. Ask other family members and friends for help. Day care centres, in-home respite and regular residential respite can provide a much-needed break, which can help you continue in your role.

A number of services may be available to support you, such as assessment teams that help work out whether home-based support or residential care is needed and arrange access to it, information lines that answer queries about home and community care and respite, respite and carer support centres that explain available community-care programs, and advisory and counselling services that provide information about relevant services and entitlements. Remember that carers of people with dementia are not alone.

Key points#

• It is important to talk things over with family, friends and others in a similar situation
• It is very important, and essential, to continue with activities you enjoy
• Seeking outside help is important for many carers
• Organise regular breaks
• Strong and shifting emotions are a normal part of caring

Where to get help#