ask an expert

ask an expert | help and info

As part of Channel 4's The Trouble with Old People season, we invited you to write in with your queries about ageing and care for the elderly. Here we have published a selection of these questions together with the replies from experts at Age Concern, Alzheimer's Society, for dementia and the UK Homecare Association. All names have been changed.

© iStockphoto.com /
William Fawcett

In the help and info section of this feature, we've listed further sources of support and information for those of you we weren't able to reply to individually, and for anyone seeking further information on the subject.

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• Philippa asks how you can sort out your own care needs when you have no surviving family.
• Jonathan wants to know if his frail mother can be forced out of hospital and into a care home.
• Mel asks if anyone can help with funding for her mother's continence aids.
• Sam wrote in to ask if there is any way that temporary home care could be arranged for her mother.
• Janice is worried about her father who is struggling to cope with being his wife's primary carer.
• Simon has a question about the criteria for NHS care for dementia.
• Katharine wants to know if there any way she can keep her elderly mother in her own home once her savings have run out.
• Claire and her siblings are concerned about her mother showing signs of memory loss and confusion.
• Selena has written in for advice about dealing with confrontations with her mother.
• Carole-Anne asks how she can help elderly people in her community.

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Age Concern reply:

Sorting out your care needs in advance is a good idea. Older people often need care for the first time following a crisis, such as a fall or a stay in hospital. This can mean having to make important, even life changing, decisions under pressure, with inadequate information, at a time when a person is a long way from being at their best.

The basis of all good planning is information. Many older people wrongly assume that needing help is likely to mean having to go (or being 'put') into a care home, so they put off finding out what is available.

Various organisations provide factsheets to guide people through the social services maze. Examples are Age Concern and Counsel and Care (see help and info).

Local organisations can also be a source of advice. Local Authorities should provide summaries of the help that they can provide, and should provide information on their website.

Some of the most important aspects of advance planning relate to people with dementia. If a time is likely to come when you can no longer make choices or express preferences, a written record of how you want to be treated would be invaluable to people involved in your care. A person who is worried that they might lose the ability to make decisions for themselves (and this could be because of an accident, or other illness as well as dementia) can appoint someone with an Enduring Power of Attorney to manage their financial affairs. From 2007 a person will be able to appoint a lasting power of attorney, who will be able to make welfare decisions as well as financial decisions. If you wish to appoint an attorney it is important to choose someone you really trust, and to make sure that they are aware of your wishes about how you would want you finances dealt with or how you would like your care to be delivered.

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Age Concern reply:

Age Concern often encounters problems with older people being pressed to leave hospital when they do not feel it is in their best interest. This is common where the care services they have been offered is not what they want. For instance they might feel the nursing home that they have been offered is unsuitable, or too far away for relatives to visit, or they might want to return to their own home. They might be able to do so if offered rehabilitation.

In your mother's case the hospital might well feel that she would be better off in a nursing home. Being in an acute hospital brings its own problems, including possible greater risk of infection. However this has to be balanced against the risk to your mother of being moved.

The hospital should have carried out an assessment of your mother's needs, which should show how those risks have been considered. The assessment is the basis on which decisions about further care are made, so there should be a discharge plan and a care plan. The assessment should show whether continuing care after leaving hospital is the responsibility of the NHS or social services. Close relatives ought to be asked for their views as part of this assessment. The way to dispute the hospital's decision would be to ask to see the assessment and discharge plan, and challenge them if they do not properly consider the risk to your mother of being moved.

The Patients Advice and Liaison Service (PALS), based in the hospital, should be able to help if you have concerns, or difficulty in obtaining information about, your mother's assessment and subsequent planning.

The legal position is very unclear. There is a gap, or lacunae, in the law, since your mother cannot legally be discharged to a nursing home against her wishes. On the other hand she does not have a right to remain in hospital once her discharge plan is in place.

The government guidance that hospitals should follow in discharging patients from hospital is on the Department of Health website. This contains a detailed section on how the assessment should be carried out. It is on the Department of Health website at www.dh.gov.uk. The easiest way to find it is to go to this website and type the guidance number, HSC 2003/009, into the 'search this site' box.

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The Alzheimer's Society reply:

Local Primary Care Trusts (PCT) may supply, free of charge, continence aids and equipment to help in nursing sick or disabled people at home and in care homes. It the decision of the PCT as to the quantity it will supply free and some will not supply any free at all. Although this may seem unfair it is not usually easy to challenge legally. If you are in a care home which provides registered nursing care, the NHS should provide, free of charge, all the incontinence pads you are assessed as needing (in England and Wales). Protective pads and pants are not available by GP prescription (except in Scotland).

You might be able to alleviate your mother's sleep problem if you can find the cause. Some of the obvious reasons may be that she:

• needs the toilet
• sleeps a lot in the daytime
• goes to bed too early
• does not need so much sleep
• is uncomfortable
• is confused between day and night.

Ensure she uses the toilet before going to bed. Discourage long sleeps during the day, perhaps by increasing physical activity.

Try to make her as comfortable as possible. A bedside lamp with a low-power bulb left on may help if she wakes up frightened. Gentle reassurance can sometimes help send someone back to sleep. If she thinks it's daytime or thinks she needs to get up for some reason you might have to play along as arguing could lead to conflict. There is a story of one carer who told of her husband who regularly woke at night wanting to go to the shops. She always said: 'All right then, let's go,' walked him round the room and back to bed by which time he'd forgotten where he was going.

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The United Kingdom Homecare Association reply:

Homecare is a popular choice for people who need care but want to remain in their own home. It can be on a temporary basis, for example while relatives are way, or on a more permanent basis. Specially trained and regulated care workers visit to help with personal care and some household tasks. They can also visit just to check that everything is okay. Visits can take place as little or as often as required, and some homecare agencies offer a night-sitting or a live-in service.

United Kingdom Homecare Association, the professional association for homecare, can send you a list of quality-assured member organisations in your mother's area. Call the UKHCA Helpline on 020 8288 1551 on Monday to Friday from 9 am to 5 pm or use the Choosing Care search facility on our website anytime: www.ukhca.co.uk/choosingcareadvice.aspx. Our website also has a list of useful questions to ask when you are looking for care. A good homecare provider should ensure that your mother is fully involved in saying what help she would like while you are away and be able to provide you with reassurance that your mother will be well-cared for while you are away.

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for dementia reply:

It is very difficult for everyone when a person is diagnosed with dementia, particularly when they are so young. The Admiral Nurse Service was established as a direct result of the experiences of family carers in similar circumstances. Admiral Nurses are nurses who have specialised in dementia care, with a remit to support carers of people with dementia by providing practical advice, emotional support, information and skills. I would suggest that you contact Admiral Nursing Direct on 0845 257 9406 to see if there is an Admiral Nurse Service in your father's area, or to talk the situation over with an Admiral Nurse.

It is very difficult for your father to let go, but as you so rightly say, it is important that he has some time for himself. It is important that he can talk with someone outside of the family who is not also emotionally involved. If there is not an Admiral Nurse in the area, perhaps there is a community mental health nurse he could talk with, or the local Alzheimer's Society.

It could be that your Mum would enjoy going to a Day Centre. Crossroads may be available; they provide an excellent service, doing something with the person with dementia while the carer has a break. Their helpdesk number is 0845 450 0350. It sounds as if your father is fortunate in having a supportive family, and I think that if you can sometimes take your mum out without him, this will be very much appreciated.

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The Alzheimer's Society reply:

Unfortunately for thousands of people across the country, when the NHS pays for care is a complicated issue. The Alzheimer's Society is campaigning for people with dementia to be given fair access to fully funded NHS care, in the same way as people with other medical conditions.

The current system of NHS fully-funded care discriminates against people with dementia. Criteria for fully funded NHS care are determined locally, which means that a postcode lottery still exists. The artificial divide between health and social care also means that people with dementia are often means tested for care they require as the result of a medical condition of the brain.

There have been a number of recent rulings on fully funded NHS care, and the government are consulting on new eligibility criteria later this month. The Alzheimer's Society hopes that the new criteria will bring clarity and fairness to the system.

For more information, and to request a copy of a Guide to fully funded NHS care, produced by the Alzheimer's Society, Age Concern, Help the Aged and Royal College of Nursing, please call the Alzheimer's Society's Helpline on 0845 3000 336.

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Age Concern reply:

Most older people who need care services want to stay in their own homes rather than going into a care home, and there are a number of ways to do this.

The first port of call should be your mother's local social services department. They have a duty to assess whether her needs entitle her to social services' help. Unfortunately cash strapped local authorities are currently restricting eligibility for assistance to those people with the highest needs, so there is no guarantee that they will help. If they do agree to provide assistance it may not be enough to ensure a decent quality of life. Local Authorities also charge for services, but they have to follow a national framework (called Fairer Charging) and if your mother has savings below £21,000 (some authorities are more generous), or a relatively low income, charges will be reduced. As local authorities have discretion about whether to charge, and how much, it varies from place to place.

In practice many relatives end up balancing complex care arrangements that involve a combination of local authority services, privately purchased care and their own efforts.

Local Authorities can offer cash payments instead of providing services so that people can decide for themselves what care they want to buy. This can give extra flexibility, which is often particularly valuable where someone is juggling help from the local authority, relatives and privately purchased care. If you are likely to be interested in this type of payment (known as a direct payment) it is best to get the assessment and entitlement to help agreed first, as some local authorities have been known to offer less help to people who want direct payments rather than services.

If you cannot get help from social services, and have to pay for care, this need not mean selling the house. Your mother could for example look at an equity release scheme or an 'immediate needs annuity'. You would need to seek advice from a financial adviser expert in the care system and in these products. Those advising about long term care products need to be properly qualified.

Another alternative might be sheltered housing. There are a growing variety of sheltered housing schemes, for rent or to buy. Some just offer a warden service, whilst 'extra care' sheltered housing provides additional help such as an on-site care service or a communal dining room. One possibility for your mother, depending on what is available in your local area, would be to sell her house and buy or rent a property in a sheltered housing scheme. However you would need to check service charges, which are often high, and check that you are clear what the charges cover.

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The Alzheimer's Society reply:

Whilst your concerns about raising the issue of memory loss and confusion to your mother are understandable it is vital that you seek medical advice.

There are several reasons why it is important to seek help if you suspect that someone close to you has dementia:

1. Having a diagnosis will help both of you plan for the future: it is better to know what you are dealing with.
2. With a diagnosis the person with dementia may be able to benefit from the drug treatments that are available.
3. Other health problems may be identified and appropriate action taken. Memory loss isn't only caused by dementia.
4. You may be able to identify sources of advice and support, both for your current situation and for the future.

You mention that your mum isn't stupid and is probably aware of her memory loss: many people find getting a diagnosis helps them to deal with what is happening to them and enables them to have a say in their future. Telling the person with dementia may be upsetting in the short term, but in the long term it may be helpful for the person to know that their symptoms are the result of an illness.

Contact the Alzheimer's Society Helpline to talk through these issues. The number is 0845 3000 336.

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for dementia reply:

You describe a very difficult situation, which can be very hurtful. When your Mum is convinced that something has occurred, it is not helpful to disagree with her. You can imagine that if we knew that something had happened and someone was saying it hadn't, we would get very angry and mistrustful of him or her. It is also not helpful to agree, as there may well be times when your Mum will know that it was not true, and again she would then not trust you. I think it is better to focus on her feelings. An example would be if she said that there was a man in the room, you could reply that you could not see him, but that you could see that she was scared, so let's go in the kitchen. You could then divert her attention to something else.

You say that in her eyes you are to blame for everything and will not accept there is anything wrong with her. This is a very common experience for carers. Perhaps she simply does not want to accept that there is something wrong, and therefore the fact that she feels in such a muddle must be your fault as the nearest and dearest. It is important to realise that it is the illness and not your Mum talking. If you would like to speak with a nurse specialist in dementia and talk over these problems, please phone Admiral Nursing Direct on 0845 257 9406

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Age Concern reply:

There are several different ways in which you could help, although the types of volunteer schemes that operate in different local areas vary a great deal. Local Age Concern groups often operate visiting or befriending schemes for isolated older people, and may also train volunteers in more specialised roles. These can include helping an older person to deal with government agencies such as social services, providing short term support to someone who has just come out of hospital, or visiting an older person so that a family carer can have a break. Some local Age Concern groups also train volunteers to carry out practical tasks.

One thing to be aware of is that if you are visiting vulnerable older people then you might be required to have a Criminal Record Bureau check and to provide references, as would be the case if you were visiting older people as part of a paid job.

Possible local contacts might be a volunteer bureau or Age Concern. Try the local library or your local Council's website. Another well known scheme is the Women's Royal Voluntary Service which delivers meals-on-wheels in many areas.

We have listed below a selection of organisations that you can contact for more information about volunteering opportunities in your community. Further organisations can be found in the help and info section of this feature.

Women's Royal Voluntary Service (WRVS)
www.wrvs.org.uk
WRVS is one of the UK's largest voluntary services, providing a range of services to help people in need who might otherwise feel lonely and isolated. To sign up, call them on 0845 601 4670 or use the online form at the above address.

Community Service Volunteers (CSV)
www.csv.org.uk/Volunteer/
CSV offer a variety of full-time and part-time volunteering opportunities around the country to enable people to take an active part in the life of their community.

Contact the Elderly
www.contact-the-elderly.org
This national charity helps relieve loneliness amongst the elderly by creating small voluntary groups that organise outings for tea in the home of a volunteer host one afternoon a month.

The Cinnamon Trust
www.cinnamon.org.uk
The Cinnamon Trust is a national charity for elderly people and their pets. A network of volunteers visits homebound owners to take dogs for daily walks, buy pet food or foster a pet when owners face time in hospital.

Alternatively, you could try the 'Goodwill Gallery' from Charity Choice. You can complete a form on their website to volunteer your professional skills or free time to UK charities. See www.charitychoice.co.uk/charitydonation.htm for more details.

Good luck!

(April 2006)

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Read on for details of relevant organisations.

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