How to manage when caring for someone with dementia

When most people think of dementia and its most common form, Alzheimer’s disease, they probably think about how difficult and frustrating it would be to forget how to do everyday tasks. But how many of us think about what it must be like for the people who care for those with dementia? This article offers advice for carers:

• where to get information and support when your loved one is diagnosed with dementia
• how carers can look after themselves
• the importance of establishing a routine
• recognising the feelings that caregivers may experience
• taking things one day at a time.

People in the later stages of dementia need around-the-clock care. Often the person providing this care is a family member. An estimated five to seven people are involved in the care of each person with the condition; around 287,000 carers in New Zealand.

Caring for someone with dementia can be rewarding, but it can also be an intense, challenging and demanding experience that requires time, patience and energy.

According to Alzheimer’s New Zealand it is important not to let caring become your whole life and to accept the need to care for yourself. Here are some tips for carers on coping with this new responsibility. 

Information is key when a loved one is diagnosed with dementia

When you find out a loved one has dementia, it is helpful to prepare yourself with as much information as possible. Knowledge can remove fear of the unknown and will help you face reality.

You don’t have to manage alone. Help is available from your local Alzheimer’s organisation, health professionals, social services and your GP.

Within New Zealand there are 23 Alzheimer’s organisations that provide information, support groups, resources and day-care programmes for people with dementia and their families. Many of the larger Alzheimer’s organisations around New Zealand offer education and training programmes for carers. These programmes can boost self-esteem, significantly reduce stress levels and offer coping strategies. There are also regular support, networking and friendship groups for carers.

Carers: look after yourselves

Monitor your stress levels. Stress is a normal part of the demanding role of a dementia caregiver, but extreme stress can seriously threaten your health.

Recognise your limits in terms of how much care you are personally able to provide. 

Write down all the things that are worrying you: the practical difficulties of managing physical care, your feelings and emotions, the lack of space or time out for yourself; and ideas about what would help. Be specific, even if the things on your list seem impossible.

Identify who you could talk to in order to get support and help, for example:

• family members 
• friends
• doctor 
• district nurse 
• community worker at your local Alzheimer’s organisation 
• minister of religion 
• social services.

Eat a healthy, balanced diet with plenty of fresh vegetables and fruit. Avoid large amounts of highly processed or high calorie food and only drink alcohol in moderation.

Try to get enough rest. If your sleep is disturbed at night, take opportunities to sleep whenever you can.

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 you 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.

Keeping a daily routine helps you and the person with dementia

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

Your feelings as a caregiver

As a caregiver you may experience a range of different and often extreme feelings:

• anger
• resentment
• guilt 
• embarrassment
• loneliness
• grief.

These can be particularly difficult because dementia causes gradual changes in a person’s abilities and personality and therefore the nature of your relationship with the person with dementia will also change. However, it is important to be aware that these feelings are all normal. Keep in touch with family and friends and discuss what is going on.

Don’t feel guilty about taking time off. Looking after someone with dementia 24 hours a day is exhausting. Plan to take regular breaks from the caring role. Ask 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 your loved one but it is often found that, after a few times, you both become used to the routine.

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 be.

Get more information about dementia and Alzheimer's disease.

Original article provided by Alzheimer's NZ. Reviewed by everybody, July 2009.