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Dementia care questions and answers

Updated Monday 7th December 2009

If you have any questions about dealing with dementia, this page provides you with information and links to websites with further details

This page was published over five years ago. Please be aware that the information provided on this page may be out of date, or otherwise inaccurate due to the passage of time. For more detail, see our Archive and Deletion Policy

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How do I know when it is time to go into a home?

Many people see admission to some sort of residential care as a last resort, although a few people welcome it and make it a positive choice. If you have been diagnosed with some form of dementia, you need to consider what extra support you will need and how you will cope if the necessary level of support isn’t available.

People choose the moment of admission for many different reasons. On balance, it is the point at which your quality of life would be better in a care home than it would be in your own home.

For example, it might be the case that your circumstances change and your main carer isn’t able to care for you any longer. Alternatively, it might be that you are no longer ‘safe’ and might need a higher level of care - sometimes people with dementia go out and cannot get home again. Sometimes people might not remember to take the medication that is essential to their health, or might inadvertently take it too many times.

Ideally, you will have given this some thought before something happens that forces the choice, for example an admission to hospital for an acute illness or following an accident.

It might be the case that in hospital your ability to stay at home is questioned, either because your mental state has deteriorated or you might have limitations due to, for example, a broken limb. If you are in hospital and agree to transfer to a care home, the head of that care home will usually come to the hospital and do an assessment in order to meet with you and to ensure that the home can best meet your needs.

What support is available?

If you have been diagnosed with some form of dementia, ask your GP what extra support you may need and what is available. This will help you, your family and friends to plan for the future with your care team.

Local Authorities carry out assessments of needs for people who require practical and financial help with care and support. You may also wish consider joining a group or organisation which can provide you with further information and support. There is a list of organisations at the end of this article.

What if I can’t cope with the person I am caring for?

There are numerous sources of help available to carers. It might be useful to have a further needs assessment to see if the person with dementia is entitled to extra support, either through your GP or Social Worker. The most important thing is to ask for help when you feel you cannot cope any longer and to talk to someone about it.

It might be that you have some respite from caring for the person with dementia and can then return to caring for him or her – if this is what you want to do. It might be possible to access more home care that would lighten your load and make it possible to care more easily.

Carers are also entitled to an assessment of needs to help them in their role as a carer depending upon their circumstances.

Please visit Directgov's Assessment for Carers section, or contact the social services department of your local council.

However, if you are considering a care home, then you need to be able to discuss this with the person with dementia and agree what criteria you will use in order to choose the home. If this type of discussion is no longer an option you can make a list based on what you know about that person’s preferences.

What should I look for in a home?

Care homes in England are regulated by The Care Quality Commission and are classified by the types of services they are registered to provide. Links to the Care Quality Commission together with regulators for Scotland, Wales and Northern Ireland appear at the end of this article.

Details of care homes and the services for which they are registered are available from The Quality Care Commission and from your Local Authority.

More excellent advice is available through this BBC Panorama advice page.

Ask your GP to arrange for an assessment of needs to help you and your care team decide what kind of care will be required. Homes are classified by type. If you have been given a diagnosis of dementia and had an assessment of need then that assessment will recommend the type of care. There are two basic types of care - one is nursing and the other residential care. People with dementia might qualify for either type of care.

Local Authorities will have set levels of finance that they will pay for a place in a care home which are provided predominantly in the independent sector with some local authority provision. If the place is more expensive than the set level, then Local Authority funding would have to be topped up.

Residents are assessed according to their income and assets to determine what funding they are entitled to. When choosing a home it is important to find out exactly what you would be charged, and what proportion of the cost you would eventually be responsible for.

The care home sector run by Local Authorities themselves has declined, with private sector homes dominating, followed by those run by not-for profit organisations.

When choosing a home, it might help to consider the location and how accessible the home is to those who want to visit. Moving into a different environment is disorientating for anyone; for people with dementia the impact is much more severe, so contact with familiar people becomes essential.

The quality of care is another key factor. You might find it useful to consider what that might mean beyond basic physical care:
Would the person with dementia want to participate in communal activities?
Would he or she object to someone of the opposite sex or someone much younger performing intimate personal care?
Are there any factors that relate to their beliefs and customs that need to be observed?

It will be important to spend time at any care home you are considering:
What is the quality of interaction between staff and residents?
Are residents engaged in meaningful activity?

These questions might help you to frame your choices. Regular assessments from your care team will help to ensure that your ongoing needs will be met.

Who will be my advocate?

It is a really good idea to arrange for Lasting Power of Attorney (LPA) to someone you can trust with your financial affairs and also whom you would trust to make decisions on your behalf if you are not able to decide things for yourself, if your capacity for decisions becomes compromised by dementia.

The Office of the Public Guardian website includes a form you'll need to complete and helpful information about what LPA means. You will need to have the form witnessed by a solicitor or notary.

How do I complain if I think that my relative or friend is not receiving adequate care?

There will be a complaints process that you need to follow for any formal complaint. The first step is to raise the concern with a member of the care home staff. Be as precise as you can, and try to suggest how the issue might be resolved. Ideally, by being clear, direct and constructive the problem can be resolved quickly.

If the solution is not obvious, you need to ensure that you have clear information about what has happened and when, so that you can make a statement of complaint.

This section of the Directgov website details the process you need to follow. The information is clear about how to make your complaint, including advice on whose help you can enlist if the complaint is not resolved to your satisfaction. You can also write directly to your care home regulator, listed at the end of this article. A voluntary organisation such as your local Citizen’s Advice Bureau can help you to make your complaint.

The Alzheimer’s Society provides care services and undertakes research focussed on improving quality of life for people affected by dementia. Tel: 0845 300 0336.

The Society also provides information on care funding.

For Dementia works to improve the quality of life for people with dementia and their carers. (Or you can phone them on 020 7874 7210.)

The National Dementia Strategy is a government initiative.

There are four independent regulators who provide information and directories about health and social care services and care homes in the UK.

Care Quality Commission (England). 03000 616161.

Scottish Commission for the Regulation of Care. 0845 603 0890.

Care and Social Services Inspectorate for Wales. 01443 848450.

Regulation and Quality Improvement Authority (Northern Ireland). 028 9051 7500.

My Home Life works to improve the quality of life for people in care homes. Tel: 020 7278 1114.

Counsel and Care provides advice and information.0845 300 7585.

Relatives and Residents Association offers support and advice for older people needing, or living in, residential care and the families and friends left behind. Tel: 0207 359 8136.

Choosing a dementia care home - What's important for a person experiencing a dementia is a booklet designed to clear up all the questions and confusion surrounding the prospect of caring for a person with dementia. You can order a free copy of the dementia guide online.

 

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