Dementia – advice for carers

Caring for someone with dementia can be an intensive, challenging and rewarding experience. It requires time and energy and can be a hard and demanding task.

Therefore, it is vital that as a carer you look after your own health and wellbeing. When you are caring for someone with dementia it is often hard to see how you could take time out for yourself. This topic looks at ways to help you, the carer, in your caring role. Older-person-and-carer-1

Be informed

Get as much information about dementia as possible. Knowledge takes away the fear of the unknown, and helps you to face the reality.

You may also decide to take part in the education programmes that are provided for carers in many areas. Being trained in the different approaches to the caring role can help to boost your self-esteem, significantly reduce your stress levels and increase your ability to cope. Contact your local Alzheimers organisation and enquire if carer education programmes are available in your area.

Enduring Power of Attorney (EPA)

The Minister for Senior Citizens Jo Goodhew has launched an information campaign encouraging people to protect ther futures by establishing an enduring power of attorney.  Information has been developed and provided to assist people with dementia, their carers, as well as legal and health professionals. 

Daily routine

Establish a basic daily routine in the household and try to stick to it. Try to keep things as normal as possible; try not to treat the person like an invalid. It is important to retain a person with dementia’s ability to carry on independently for as long as possible. This will help them retain some sense of dignity and usefulness. Encourage the person to use remaining skills to carry on with tasks they are still able to achieve.

Ask for help

It can be easy for carers to underestimate their needs or fail to do anything about them or they simply don’t know where to turn for help. Seeking help early and using the support services available will enable you to continue caring at home for longer. It is best not to wait until you are desperate or exhausted before you ask for help or an outside person or agency has to intervene because your situation has got to crisis point.

It is important that you do not try to manage alone. You are entitled to help from health professionals and social services and your local Alzheimers organization or GP can help you access them. Family, friends and neighbours may offer to help. They really mean it, so take up their offers. Think of ways to let them help with caring and explain exactly what you would like them to do. Be open with your family, friends, and neighbours and tell them the truth. Be clear and open about your expectations of family members.

Support groups

For many involved in caring, a support group is a great help. These groups can maintain your well-being and support you in your role as a carer. There’s nothing like meeting with people who know exactly what you are going through. Contact your local Alzheimers organisation to find out details of support groups in your area. You don’t have to be the full-time carer to access these support groups – they are often open to friends, neighbours, children and siblings.

Services

Your doctor is the first person you should contact if you are concerned about the person in your care or yourself. Experienced carers suggest that you need to be assertive and persistent with doctors who aren't immediately helpful. When visiting the doctor make a list of things that are difficult or bothering you so the doctor has a clear indication of your problems. Keep in regular contact with your GP and/or specialists as needs will change over time.

Services such as day programmes, respite care and home help can be accessed after a person with dementia has been assessed by someone from their local Needs Assessment team. You can contact your local Needs Assessment service directly or you can be referred by your GP or local Alzheimers organisation.

Day programmes

Day programmes can have two-fold benefit. They provide motivation and socialisation for people with dementia while providing respite for the carer. Day programmes are provided in different facilities; some will be designed especially for people with dementia, others will be shared with people without memory loss. Enquire about suitable day programmes by contacting your Needs Assessment team or local Alzheimers organisation.

It may be difficult to introduce the idea of going to a day programme to a person with dementia as they may not see the need to go and may prefer to remain at home. It can take time for a person with dementia to get used to a new environment and new people. Ask other people, such as your doctor, family and friends to provide encouragement and to reinforce the positive benefits. Attending a day programme may give you confidence that others can provide alternative care too. It may also prepare the person for their transition to residential care should the need arise. Begin by trying day care one day a week and increase this as the person gains confidence to attend.

Your local DHB will contract dementia day care services within your area - please ask your local Needs Assesment Service to provide you with this information in regards to access and availability.

Respite/sitter services

Short-term care for a person with dementia is known as respite care and this can be provided in the community or in a residential care facility. If a person with dementia can not be left alone, a “sitter” may be able to come and be with the person while you go out. Some Alzheimers organizations provide sitter services; contact your local organisation to see if this available in your area.

Use the time you have to yourself from day care, home care or respite to do something you want to do, rather than something you have to do. Take the time to meet up with friends, do your hobbies or just take the opportunity to have quality time to yourself.

Carers: look after yourselves

It is important that you stay physically and emotionally healthy. 

      • Eat a healthy, balanced diet – plenty of fresh vegetables and fruits; avoid large amounts of highly processed or high calorie food; take alcohol in moderation.
      • Keep in touch with family and friends. You deserve and need a social life outside your carer role.
      • Take time out to maintain your interests and hobbies. It is important that you still continue with the activities you enjoy. You have a right to follow your own interests outside of the caring role, and it is important that you do so.
      • Find ways to relax. Some people find that time spent in prayer, meditation, self-reflection or counselling can help boost morale. Walking is an excellent stress relief and also very calming for a person with dementia. Try gardening to lift your mood and relieve nervous tension.

Take regular breaks

Don’t feel guilty about taking time off. Looking after someone with dementia 24 hours a day can be exhausting. Plan to take regular breaks, ie, some time each week to spend out of the caring role. These breaks may involve friends, family or outside agencies to allow you a rest for a few hours. The first few times may be difficult for both you and a person with dementia but it is often found that after a few times you will both become used to the routine.

Be positive

Your attitude can make a difference to the way you feel. Try to focus on the good things and try to not think about the things a person with dementia can no longer do. Try to make every day count as there can still be times that are special and rewarding.

Take things one step at a time

You might find it easier to cope once you have adapted to taking one step at a time. Try to focus on what you are doing right now and don’t worry about what has been or what will beTry to get enough rest. If your sleep is disturbed at night, take opportunities to sleep whenever you can.

Credits: Alzheimer's New Zealand. Updated July 2014 Sue Thomson Northern Regional Dementia Behavioural Support and Advisory Coordinator.