Dementia – for carers

Be informed

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 New Zealand(external link) or Dementia New Zealand(external link) group.
• Get advice from other carers and whānau members having similar experiences to you.
• Ask questions of healthcare providers and social service agencies. There's no need to be shy, these people want to help your loved one and it's their job to help you.
• You can find information in the booklets and brochures in the more information section at the bottom of this page. There are also links to information you can trust on the internet including booklets and factsheets from Alzheimer's New Zealand(external link). 
• See the Dementia Learning Centre at Alzheimer's New Zealand(external link), a hub for dementia education. On their website you can find an online Caring for the Carers programme with a range of tips, resources and advice about mental and physical wellbeing, rest and relaxation, diet, and lifestyle to ensure care partners can manage the stresses of their role better. 
• The Dementia New Zealand website(external link) is a good place to go for information. 
• Take part in education programmes provided for carers in many areas. This can help to reduce your stress levels and increase your ability to cope. 

Have a daily routine

Establish a basic daily routine in the household and try to stick to it. Try to keep things as normal as possible and don't 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 might mean doing part of a task they used to do by themselves, eg, folding the towels but not doing the ironing. Or it might mean taking longer than they used to, and longer than it would take if you did it for them, eg, doing up buttons. This helps them keep a sense of dignity and usefulness.

Focus on what is still there

Your attitude can make a difference to the way you feel. Try to focus on the good things rather than the things a person with dementia can no longer do. There can still be times that are special and rewarding. 

You might find it easier to cope once you've adapted to taking one step at a time. Try to focus on what you're doing right now rather than worrying about what has been or what will be. Learning mindfulness can be helpful.

Ask for help

It can be easy for carers to ignore their own needs, 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.

Caring for a person with dementia is not a one person job. It's important that you don’t try to manage alone. 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’s best not to wait until you're desperate or exhausted before you ask for help. It's better for you both if you can make a plan to get support and stay on top of things – don't wait until you can no longer cope. 

Whānau, friends and neighbours may offer help, so take up their offers. Think of ways to let them help and explain exactly what you'd like them to do. Examples might be doing a puzzle with your loved one while you go for a walk, keeping you both company for a while, or dropping off a meal once a week.

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Join a support group

A support group can be a great help for your wellbeing and support for you as a carer. There’s nothing like meeting with people who know and understand what you're going through. Contact your local Alzheimer’s organisation(external link) or Carers New Zealand(external link) to find out details of support groups in your area. Or search for online support groups through social media. You don’t have to be a full-time carer to access these support groups – they're often open to friends, neighbours, children and siblings.

Access services

You’re entitled to help from healthcare providers and social services. Your local Alzheimer’s NZ or Dementia New Zealand branch or medical centre can help you access them.

Your GP or nurse practitioner is the first person to contact if you're 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 idea of your problems. Keep in regular contact with your healthcare provider and/or specialists as needs will change over time.

Carer Support is a subsidy available to full-time carers to give them a break from their caring role. It provides reimbursement for some of the costs of care and support for the person you're caring for while you have a break. Services (eg, 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) service yourself, or you can be referred by your healthcare provider or local dementia organisation.

Ask about day programmes

Day programmes provide motivation and socialisation for people with dementia while providing a break for the carer. Some day programmes are designed especially for people with dementia, some are shared with people with other needs.

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 stay at home. It can take time for them to get used to a new environment and new people. Ask other people (eg, your healthcare provider, 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 if it’s needed in future. Begin by trying day care one day a week and increase this as the person gains confidence.

Use 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 home. If a person with dementia can't 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) to see if this service is available in your area.

Use the time you have to yourself from day care, home care or respite care 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's 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 whānau 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, and it's 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 can also be calming for a person with dementia. 
• Being outside in nature can be refreshing and relaxing. Read more about how to let nature in to support your wellbeing and support your wairua. 
• Try to get enough rest. If your sleep is disturbed at night, take opportunities to sleep whenever you can. 

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 – 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 the person you care for but after a few times you'll both become used to the routine. 

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