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Dementia - Living with dementia

NHS Choices Medical Reference

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Staying independent

A diagnosis of dementia will have a big impact on your life. You and your family may worry about how long you can care for yourself, especially if you live alone. People with dementia can remain independent for some time but will need support from family and friends.

Living at home

In the early stages of dementia, many people with dementia are able to look after their homes in the same way as before their diagnosis. As the illness gets worse, people with dementia find it difficult to look after their homes and will need help with daily activities such as housework and shopping. They may also need adaptations to their home to keep themselves safe, mobile and independent. 

Keeping active

People with dementia should continue to enjoy their hobbies and interests. These activities are enjoyable and keep people alert and stimulated so they maintain an interest in life. Do not rule out an activity simply because you or your family member has dementia. Activities may change as the illness gets worse, but people with dementia can and should continue to enjoy their spare time.

Social life

It's easy to feel isolated and alone if you or someone you care for has dementia. But keeping in contact with other people is good for people with dementia because it helps to keep them active and stimulated.

Some people will find it difficult to talk about their own or a family member's dementia, or want to help but do not know how. If a friend or family member finds it hard to talk to you, don't lose touch. Make the first move, explain that you still need to see them and tell them how they can help you. You may also find it helpful to join a local group of people with dementia and their families.

Driving

Some people with dementia prefer to give up driving because they find it stressful but others can continue driving for some time. To continue driving, you must inform the Driver and Vehicle Licensing Agency (DVLA) that you have dementia. To protect themselves, their passengers and other road users, people with dementia must give up driving when their symptoms have become bad enough to make them unsafe drivers.

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Sleeping well

Sleep is often disturbed in people with dementia, who may wake up or be restless at night. These problems may get worse as the illness progresses. People with dementia may also have painful illnesses such as arthritis that cause or contribute to sleep problems.

Some drugs can cause sleepiness during the day and interfere with sleep at night. Sleeping drugs can be used with care in people with dementia. But 'sleep hygiene' measures are best for people with dementia. These approaches include no naps during the day, regular bedtimes and no alcohol or caffeine at night.

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Feeling down

If you or a family member has dementia, you may find it difficult to be positive all the time. Remember, you're not alone and that help and support is available. Talk to someone about your worries. This may be a family member or friend, a member of your local dementia support group, or your GP can refer you to a counsellor in your area.

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If you work

Coping at work is a worry for people with dementia. You should speak to your employer as soon as you feel ready. You can also get advice from the disability employment advisor at your local job centre, your trade union or your local Citizens Advice Bureau. If you decide to leave work, get advice on your pension and benefits.

You could continue working or get back to work by re-arranging your workload with your employer. Your local disability employment advisor can help and advise you.

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Dementia and relationships

It's important to tell your family and friends if you have dementia so they understand what is happening. If you find this difficult, you could ask your doctor to discuss your symptoms with your family. As your symptoms worsen, your family will then understand why you may not always remember them.

Dementia does not necessarily prevent you from continuing to enjoy your relationships and previous sex life. Some couples find that they can still be close even if other abilities have declined. But dementia can increase or reduce previous sexual feelings, and you or your sexual partner may find this distressing.

If you feel able, talk to family and friends, or other people with dementia. Alternatively, your GP can help you find a counsellor or therapist who can provide professional advice.

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Financial support

People with dementia need to organise their financial and legal affairs while they're able to make decisions. Get professional advice on wills, pensions, how to manage any financial assets, and how to ensure that any partner and children are protected.

Someone with dementia should consider appointing a person to manage their money in case they are no longer able to do so themselves. This 'lasting power of attorney' also means the person can make decisions about health and welfare matters on your behalf.

Someone with dementia could claim a range of benefits if they meet certain conditions. These conditions will vary according to you and your family's circumstances, but people with dementia can usually claim attendance allowance or Disability Living Allowance. Carers should also check if they can claim carer's allowance. You can get advice and help in claiming benefits from your local social security office, voluntary organisations and support groups.

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Care at home

A person with dementia should have a health and social care assessment from the local social services team. Following this assessment, an occupational therapist may recommend practical support, such as equipment and adaptations to your home that will help make life easier and keep you independent for as long as possible.

You may also be entitled to 'direct payments', which are local authority payments for someone who needs help and would like to buy services such as help with housework, washing and dressing, instead of receiving them from the local council.

As symptoms get worse, people with dementia and their carers may begin to find it difficult to manage at home even with regular respite care. The next step is long-term care in a residential home or a nursing home. A residential home offers help with personal care, while a nursing home provides more specialised care. Before you decide on the move to a care home, it is essential to get advice on paying for this care.

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Support for carers

It's important for a carer's physical health and psychological wellbeing to be able to take a break (respite) from care. Carers may also need respite care when they themselves have to go into hospital or meet other important commitments.

Friends, relatives and neighbours can provide respite care at home. You can also arrange home respite care through homecare agencies or, in some areas, your local authority. Care away from home can confuse some people with dementia, both while they are away and when they come back. If you decide on respite care away from the person's home, it's a good idea to visit the place beforehand to check that it meets the needs of the person with dementia.

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Palliative care

People with dementia often live for many years after their illness is diagnosed. End of life or palliative care supports anyone with an incurable illness to live as well as possible until their death. It also involves support for family members.

The National Institute for Health and Clinical Excellence (NICE) identifies end of life as a key part of a care plan for the person with dementia. This plan should enable the person with dementia to die with dignity where they wish, and to support carers during bereavement. After their diagnosis, people with dementia may also wish to think about their own preferences for end of life care, for example, by making an advance statement of their wishes.

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Medical Review: October 04, 2010
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