Getting help

Help from family and friends

• try to have clear and regular communication with family and close friends from the outset
• hold meetings from the point of diagnosis and as the individual's needs change, so that necessary support can be discussed and shared
• if possible, agree a rota of visits among family and friends living nearby - it will stop all the pressure being put on you
• encourage family members to bring old photos or objects that would prompt memories and reminiscence
• if the person you are caring for finds it distressing to spend time with other people they don't recognise, ask family and friends to help in other ways such as with shopping or cooking.

Outside help

A person with dementia may not realise or want to admit that they need help. Help might be more easily accepted if it is introduced in the earlier stages of dementia, and is available from various sources. Support can differ from region to region, so contacting your local social services department or the Alzheimer's Society is a good starting point. Visit their website at: http://alzheimers.org.uk/

Community care assessment

Local Authority Social Services departments have a legal responsibility to assess the needs of all individuals who may require care. You can request an assessment on behalf on someone else or the person with the illness may be referred by their GP.

Types of help

• home care workers or care attendants can help with the personal care of the individual such as helping them get up in the morning, washing and dressing them and assist in getting them to bed at night
• day care may be available locally in the form of day care centres or drop in centres
• you may be able to arrange domestic or personal care support privately through a nursing or home care agency.

Specialist equipment

There is a wide range of day-to-day equipment available which you may find useful. The need for this will vary as the dementia progresses, but could include:

• prompts or memory triggers such as notice boards, large or talking clocks or thermometers
• mobility aids such as wheelchairs, walking frames, stair lifts or hand rails
• continence aids such as raised toilet seats, bed pans, commodes and pads
• washing aids such as walk-in or sit-in showers, bath seats or hoists
• specialist cutlery, cups or crockery to enable the individual to feed themselves for as long as possible
• kitchen adaptations such as glass fronted refrigerators that help to remind the individual to eat
• medication aids such as boxes for tablets with a section for each day of the week and times of the day
• safety devices such as pressure pads, that can be placed by doors to detect movement, gas detectors, devices to control the temperature of hot water and restricted flow taps.

Taking care of you

If you are a carer for someone with dementia, it is really important that you care for yourself, whether it is because you are also leading your own life, wanting to provide the best possible care to the person you look after, or planning for the time when you no longer care for the person with dementia. You don't have to cope alone. There are many sources of help available.

The simple things are important.

• getting enough rest
• eating well
• taking breaks from caring
• getting some fresh air and exercise
• getting the support of others to ease pressure, frustrations and general ability to cope
• checking whether you are entitled to benefits
• ensure you receive a carer's assessment, which you are entitled to, to identify ways you can be helped

Support groups

Support groups in your area can give you the opportunity to talk to other people in the same situation, as well as sharing tips and advice, worries and frustrations.

Find out about your local groups from:

• The Alzheimer's Society - www.alzheimers.org.uk
• Age UK - www.ageuk.org
• your local library, doctor's surgery or chemist
• your GP
• The Princess Royal Trust for Carers - www.carers.org
• Carers UK - www.carersuk.org or Carers Scotland - www.carersscotland.org

Thinking about a care home

Carers often feel that moving the person into a home is a 'betrayal'. You may feel that you have let the person down, or that you should have coped for longer. You may have previously promised the person that you would always look after them at home, and now feel forced to break that promise.

Talk this through with someone who understands and who can help you come to terms with your decision. Remember, promises were probably made in a completely different situation when you had no idea of all the strains and stresses that lay ahead.

The move to a care home doesn't need to mean giving up your caring role entirely unless that is what you want. It's just a different way of caring and your involvement will still be important.

When to look for a care home

The effects of dementia worsen over time, and most people will need to go into specialist accommodation before they reach the last stages of their illness. There may be a number of reasons why a person has to move on from their own home:

• the person with dementia is becoming unsafe on their own, e.g. leaving the cooker on or wandering into the street
• carers are having to provide increasing physical support for things like getting in and out of bed
• caring for the person is becoming too much for the primary carer
• levels of confusion or frustration are causing the person to become very upset or aggressive, or to do things which are inappropriate.

It's common to feel uncomfortable about the idea of a care home and you may feel guilty, but most people with dementia will reach a point when they will be safer and more comfortable in specialist care. They would not want to make life difficult for their family and friends but are probably unaware of the impact that they are having on others.

They may also be finding life at home increasingly difficult, confusing and frightening themselves. Living in a care home not only provides personal and health care within a setting that is safe, it also provides the opportunity for activities and companionship, and importantly it can offer peace of mind to all concerned.