Dementia – for carers

Get as much information about dementia as possible. Knowledge takes away the fear of the unknown and it helps you know what to expect and what support is available. 

• Speak to someone from your local Alzheimer’s NZ(external link)(external link) group.
• Seek advice from other carers and family members who are or have had similar experiences to you.
• Read books and brochures including those in our resources section.
• Ask questions of health professionals and social service agencies.
• Source reliable information from the internet such as these booklets and factsheets(external link) from Alzheimer’s NZ or this respite and residential care guide from Alzheimer’s Australia (2009) Younger onset dementia – a practical guide (pages 14–20 include useful tips for managing dementia behaviours).
• Take part in education programmes provided for carers in many areas. This can help to boost your self-esteem, reduce your stress levels and increase your ability to cope. See the Dementia Learning Centre, Alzheimer’s NZ(external link)(external link) – an hub of excellence for dementia education.

Establish a basic daily routine in the household and try to stick to it. Try to keep things as normal as possible and not treat the person with dementia like an invalid. It’s important to support them to be independent for as long as possible, doing tasks they can still carry out. This helps them retain some sense of dignity and usefulness.

It can be easy for carers to underestimate their own needs and not do anything about them, or simply not know where to turn for help. It may also seem hard to take time out for yourself, but it’s important that you do.

Seeking help early and using the support services available helps you to continue caring for your family member with dementia 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’s important that you don’t try to manage alone. You are entitled to help from health professionals and social services. Your local Alzheimer’s NZ organization or GP can help you access them. Family, friends and neighbours may offer to help, so take up their offers. Think of ways to let them help with caring and explain exactly what you would like them to do.

A support group can be a great help for your well-being and support for you as a carer. There’s nothing like meeting with people who know exactly what you are going through. Contact your local Alzheimer’s organisation(external link)(external link) 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.

Your doctor is the first person to 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 to talk about 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 and Service Coordination (NASC)(external link)(external link) service directly or you can be referred by your GP or local Alzheimer’s organisation.

Day programmes can have a 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 and Service Coordination (NASC)(external link)(external link) team or local Alzheimer’s organisation(external link)(external link).

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.

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 cannot be left alone, a sitter may be able to come and be with them while you go out. Contact your local Alzheimer’s organisation(external link)(external link) 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. Meet up with friends, do your hobbies or just take the opportunity to have quality time to yourself.

It is important that you stay physically and emotionally healthy. 

• Eat a healthy, balanced diet and if you drink alcohol, stick to the recommended guidelines.
• 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. 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.
• Keep moving. Walking is an excellent stress reliever and also calming for a person with dementia. 
• Try to get enough rest. If your sleep is disturbed at night, take opportunities to sleep whenever you can. 

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, eg, 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. 

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. 

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 be.  Learning mindfulness can be helpful.