Hope for Home

Our advice articles are designed to help you care for your loved one at home.
  • Dementia: the facts

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    This section gives an overview of the numbers of people suffering from dementia in England together with some information about carers.

    It has been estimated that there were approximately 800,000 people with dementia in the UK in 2012.[1]. Now (2015) the number has risen to 856,700 which is predicted to double in the next 25 years.

    In 2005 it was recorded that dementia accounted for 3% of all deaths in England and Wales.[2] This was where dementia was given as the cause of death on the death certificate. However, it is also estimated that if dementia had been included as a cause on the death certificate where it was not identified as the primary cause of death, four times as many people as this had dementia when they died. Dementia is now included as an underlying or contributory factor on death certificates.

    People can live for many years with dementia, with the average time from diagnosis to death being 9–12 years. Frequently the diagnosis may be made late in the illness, so that in some instances dementia may last as long as 20 years. The symptoms of dementia can also be found in people with advanced Parkinson’s Disease.

    PARKINSON’S UK www.parkinsons.org.uk is a well established support and research charity that provides information, advice, support and helpful publications for people with Parkinson’s disease and their families.

    One of the main risk factors for dementia is age, and given the ageing population of the United Kingdom, this means that the numbers of people suffering from dementia are estimated to continue to rise steeply.

    Most people with dementia are cared for in their own family home during the early stages. Unpaid carers (mostly female family members) provide the majority of care in the community, saving taxpayers several billion pounds each year.

    The majority of people with dementia and their carers express their preference to have health care delivered to them in their own family home. Given this scenario, and in conjunction with the national emphasis on people being given more choice about where they receive their health and social care, the benefits of a charity such as Hope for Home, with its stated objectives, seem both timely and appropriate.

    [1. Alzheimer’s Society (2012) Dementia: A National Challenge]

    [2. Office of National Statistics (2005) England and Wales – cause of death as stated on death certificates.]
  • Caring at home: the rewards

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    Very little research is focssed on looking after people with dementia at home. The following is a summary of a study carried out between 2005 and 2007 by our Trustee, Dr Adrian Treloar, FRCP, MRCPsych, MRCGP, with Monica Crugel Specialist Registrar in Old Age Psychiatry, and Dimitrios Adamis, academic Old Age Psychiatrist.

    The final, definitive version of this paper has been published as an article in the journal ‘Dementia’ 2009 volume 8, pages 335–347 by Sage Publications Ltd and the full unedited version can be found at
    http://dem.sagepub.com/cgi/content/abstract/8/3/335

    Palliative and end of life care of dementia at home is feasible and rewarding as results from the Hope For Home study show: –

    Background

    Palliative and end of life care for non-cancer patients is a key priority for the NHS as is the support of the dying, through to death at home. Recent guidelines have highlighted the need to ensure that people with dementia have the same access to palliative care services as others. Even though it is estimated that family carers of people with dementia save the UK over £6 billion a year and 63% of those people live in the community a recent report concluded that the current health and social care systems fail to offer sufficient support.

    Definitions

    The definitions of palliative care and end of life care are subject to on-going debate. Palliative care is used in this study as ‘the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments’. (National Council for Palliative Care. 2006) End of life care helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support. (Department of Health 2008)

    The Hope For Home study

    The work to support patients with advanced dementia at home through to death started as a result of carer demand. The service has grown and is strongly valued by carers. At present the service can support fifty people with the explicit agreement that holistic, home-based and palliative care will be provided throughout the progression of the dementia until death. Input consists of regular visits to monitor and adjust medication and care input, to give advice and discuss worries, as well as visits on request for any reason. The Hope For Home study took the form of an exploratory, retrospective study of patients who died between 2003 and 2006 and had been supported at home until death. It was decided to undertake detailed interviews with the key carers of the first fourteen patients successfully managed at home with the aim of identifying the major factors which make such care feasible.

    Findings of the study

    The carers
    Carers were found to be determined and often quite able although nearly all reported some physical health problem. Physical frailty and age did not appear to be a bar to caring, with one frail carer being 91 years old. Some carers had been told by statutory agencies that they would not be able to carry out their intentions as they had no experience of such care and it would be risky or impossible. This kind of advice tended to be ignored and carers went ahead in spite of it. All but one of the carers thought that caring had helped them to cope with bereavement, and only two had required any formal post-bereavement counselling.

    Resources required for caring at home

    Professional expertise
    Carers relied upon a wide range of professional expertise; GPs, district nurses, OTs, social workers, social services carers. Problems with the irregularity of time and change of person visiting were very common, ‘we tried social service carers for six weeks. In that time twenty-one different people came’. One carer finally advertised for paid help after finding all other sources deficient. All the carers in the study felt that Old Age Psychiatry input was indispensable with one carer feeling that it had been the only real source of help.

    Equipment

    Carers were asked to rate the usefulness of various pieces of equipment and how easy or difficult it was to obtain equipment. Indispensable equipment was found to be continence pads and sheets, commodes and wheelchairs. Hospital beds, high chairs, pressure relieving cushions and electric hoist were rated as very useful followed by walking frames, adjustable electric chairs, and toilet/bath/shower aids. The availability of the needed equipment was variable and depended on the carer’s knowledge and help given by professionals. Several carers had to purchase at least some equipment from their own funds.

    Funding and financial control

    The study found that home care saved statutory services large amounts of money. It was calculated that the total spend on care provision by health and/or social services on the fourteen patients was £337,670 whereas the cost of nursing/residential care would have been over £1,034,600. Many of the carers found it very important that they had financial control of the provision of care staff. There were repeated themes that carers engaged by local authorities and other statutory agencies worked to a set plan and could not vary what they did according to need. These problems were resolved when carers were engaged directly by the key carer of the person with dementia.

    Availability of support and services

    A repeated theme from the study was the need perceived by carers for someone who would visit regularly, advise and bring in other people. There were repeated concerns about blockages to care and non-availability of help ‘until she got attendance allowance no-one wanted to give any help at all’.

    Feeding

    Feeding is a central issue for end of life care dementia. Carers described many techniques for maintaining food intake when patients lost weight. The importance of ‘good nutritious food well laid out’ was stressed. In very advanced dementia patients do stop eating, sometimes for days at a time. In these circumstances carers concluded that patients should not be fought with to eat, if they did not eat for a day or two they usually caught up later.

    End of life care and place of death

    There was a strong feeling among the carers that hospital was to be avoided with all those whose relatives had died at home saying they would not have wanted them to go to hospital. The few carers whose relatives spent the last few days of their life in hospital only saw this happen because, for example ‘he went in because of distress at the last minute’. These patients were included in the study as the intention was that they should remain at home. The study found that 6 of the 14 patients died in hospital. This might be seen to invalidate the notion that care at home is feasible, but the time in hospital before death was short and the patients had no access to the specialist out of hours service advice which might have prevented such admissions.

    Overall evaluation by the carers

    All the carers said they were glad they did what they did and 100% said they would do it again. Eleven of the fourteen stated that they thought that what they did was so important they would have risked their own health to do it. Two of those who did not agree with this were parents of young children.

    Conclusion

    The Hope For Home study has demonstrated that managing advanced dementia through until death at home is both feasible and associated with good outcomes. It has been found that grief is greatest for carers at the moment of separation when someone with dementia goes into a nursing home placement. The results of the study suggest that the extra work and involvement of hands on care may alleviate rather than simply delay that grief. The study produced repeated themes from the carers who were interviewed which suggest that as with palliative care for cancer, dementia care requires expertise and support specific to that illness. Services as they are currently set up do not respond coherently or appropriately to that need. Existing old age psychiatric services for dementia should be skilled up and developed to provide the same kind of palliative care services as cancer receives. The mix of advanced disability as well as challenging behaviour caused by dementia, and the need to continue to adjust psychotropic medications suggests that Old Age Psychiatry has a key role to play in this field. Old Age Psychiatry services were particularly strongly valued by the carers in the study. The study also highlighted the fact that home care can be cost effective, saving money over the costs of institutional care. Of course, home care should be provided because it gives better care, but the additional fact that it saves money ought to make services that support advanced dementia at home a priority.
  • Caring at home: your decision

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    There are several reasons why one might want to care for someone at home with dementia. Often enough, husbands and wives in particular, just cannot bear to be apart after so many years of marriage and family life.

    The one left behind is bereaved and alone. The trek to the nursing home is long and hard. Being together is a good reason to “Hope for Home”. Long years of togetherness have been chosen and should not be given up lightly.

    Sometimes, being at home may be worse for the person with dementia. This would be a good reason not to try. But there will always be risks with whatever we do, and when nursing very frail and ill older people it may well be best to take risks.

    Survival in nursing homes is not good, and survival of people with advanced dementia in hospital is also poor. We have certainly noted that, in the end people do well at home and may do better there than in a home. But it will always be absolutely necessary to understand that caring for someone at home carries risks. They may die as a result. Having accepted that, they may turn out to live in greater comfort and for longer than they would elsewhere.

    Everyone who cares for someone with dementia at home should have access to specialist advice and also equipment. It should be of a standard and availability that is no less than that which is available to patients with terminal cancer.

    Given that it is often not of such an availability and standard, strong effort should be made to get nursing, GP and old age psychiatric services involved in such endeavours.

    Carers should be aware that their health may suffer as a result of what they do. This may well be a right and good thing. For those who are married, the vows they took accepted that caring and loving may well mean that we are open to coming to harm as a result of the commitment that we make. Others too, including children, will have reached a point where their commitment to a person embraces the possibility of risking health for their welfare.

    Many carers believe therefore that it would be right to risk ones own health for the well-being of the person with dementia. And yet this must always be carefully balanced against the other responsibilities that people have, to children, grandchildren and many more.

    Most importantly, one must not be reckless. With modern aids and help from others, there are few circumstances where health is clearly risked. So with careful planning, while ones personal life may be hugely changed, risk to ones own health should be minimised.

    And yet perhaps, it would still be wrong to risk the marriage of ones children or the welfare of grandchildren for all this. Take advice, plan and think it through. Be careful, but be adventurous.

    Identifying the Main Carer

    In the end there will be one person in overall charge. Often a spouse, sometimes a son or daughter, sometimes a friend. Someone will carry the can. It is clear that that person will almost always need to be in quite good health, committed to the task and able to give up enough time to the job in hand.

    That person should usually have, or be able to develop a little team of support and help that will carry them through and enable them to deal with crises etc.

    Is the Person with Dementia Able to Help?

    When someone with dementia is living in a family, it is very clear that the process of care will work if the family can survive. There is therefore nothing wrong with some of the carer time going into ironing or hoovering of a family home.

    There should be a little balance here, but it is the case that people dying with dementia have continued to contribute in a very good and positive way to their family during their last illness.

    In this way the person with dementia can still have an important role to play within the family, which can enrich the experiences of carers and other family members and friends, especially children.

    Big Houses or Small Flats

    Wherever “Hope for Home” style dementia care is done, it will be necessary to rearrange furniture and other things to meet the increasing dependency and care needs of the person with dementia.

    Putting a bed in a downstairs room, for example, is not enough. Other things must be moved out to make space. A hospital bed and a hoist needs a lot of space, especially when it is set up next to a commode and a comfortable chair.

    So you may need to get rid of some cherished furniture, at least as far as the garage. Having said that, we have seen terminal care of dementia managed in large 5 bedroom Victorian houses, as well as small cottages and modern one bedroom maisonettes.

    The only requirement is that there is enough space to move around furniture and redesign the way in which the house runs. This is very hard for some people. Years of things being in one particular place is all too much. But if you can move things around and get rid of the odd cherished cupboard, things are much more manageable.

    Having a bed and chair on the same floor as the normal living area is important. Someone with advanced dementia will be very cut off if they are nursed upstairs with all the cooking and activity going on downstairs.

    We think that it is usually best therefore to have the bed downstairs. Most carers do this and find that the person with dementia can then go to bed for a few hours in the day as they get weaker and frailer, without having to be left alone and too cut off.

    Aids and Appliances

    Getting the right aids and appliances is absolutely essential to the care of people with advanced dementia. The good news is that aids are becoming more available and that they are getting better.

    Hospital beds, hoists and other advanced aids are easier to obtain than before, better designed and a real asset. Beds that change position, that help you to sit up the patient using inflatable backrests, or other raising mechanisms make a real difference. They enable a sick person to be moved and to have their position changed easily and frequently.

    Our carers have found a wide range of appliances to be useful and the list below is a summary of the most popular items. Most will need some. No-one will need everything. Each circumstance must be tailored to the needs of the individual.

    Some carers have found what they need by looking through aids and appliance catalogues. Others have got them from appliance shops. Ideally all these things should come from the Health and Social Services.

    But carers do find that these services are sometimes slow and patchy, so that if you expect everything to be provided, it just doesn’t work. At other times, Health and Social Services provide excellent and very prompt care.

    The Most Commonly Needed and Recommended Aids and Appliances

    These include:-

    • Walking frame
    • Commode
    • Hospital bed with adjustable height
    • Mattress elevator for sitting up in bed
    • Shower bath aids
    • Wheelchair
    • Special mattress
    • Continence pads
    • Continence sheets
    • Other continence aids
    • Chair
    • Cushion
    • Toilet raiser
    • Adjustable electric chair
    • Electric hoist
    • Shower wet room (flat floor shower is very important as it is very hard to get a disabled person into a normal shower cubicle)
    • Shower stool
    • Other continence aids and better trained advisors
    • Ramps
    • Pressure mattress
    • Grab rails
    • Stair aids / lift
    • Properly adapted cars (disability living can help with this)
    • Appliance shops
    • Skin care equipment
    • Assistive technology
    • Red Cross (a useful emergency source of wheelchairs and other help in some districts)
  • Caring: the practicalities

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    Why do we care for people with dementia at home?

    It is a cherished thing, to die at home with one’s family.

    Cancer charities and cancer services provide extensive support and services with a focus on home support and advice. Against this background, the vast majority of people with dementia die away from home. Recently some hospices have begun to provide outreach services for people with advanced dementia living in their own homes.

    Many people with dementia live for years in nursing and residential homes, having been placed there at times when they were disturbed and agitated. Later on, once these problems have settled, they remain there. Discharge is not considered and neither are the things that might make care at home possible.

    Very many people have the aspiration that when they die, they will die at home in the care of their loved ones. Of course, this reality does not turn out to be the case for very many people. In cancer care large efforts have been made to develop community teams who will provide palliative care and advice on all aspects of care that patients may need in order to stay at home.

    This work has been successful and is well received by local communities. It is often funded by charitable money.

    By contrast, the vast majority of people with dementia die in hospital or residential/nursing care. Few people with advanced and complex dementia die at home, and few live at home in the months or years leading up to the end of their life.

    In part this may be because the demands of advanced dementia are not the same as the demands of cancer care. Increased levels of agitation, depression, psychoses and behaviour disturbance are all common features of severe dementia.

    The fact that people with severe dementia have poor mental capacity and poor understanding is an additional cause of complexity.

    Often enough in other situations, palliative care is implemented at a time when the patient is mentally competent and is able to understand and work with the things that are being proposed and done for them.

    Despite the problems associated with delivering care to people with dementia, it is now clear that care for advanced dementia at home is feasible.

    Experience in South East London over the past few years has shown that regular input at home, with specialist medical and nursing advice and support, has enabled people with advanced dementia, even those who may require 24-hour nursing and physical care, to remain at home up until the time of their death.

    Early results from qualitative research have shown that things were better as a result of care at home, and that the success of such care requires a broad range of categories of support to make it successful.

    Intrinsic Carer Factors

    We think that it is necessary for carers to be relatively robust, determined to succeed and in reasonable physical and mental health. Mental frailty in the key carer seems to be particularly problematic. The key carer will often be a spouse, but at other times may be a daughter or son or a friend, for example.

    We have found that carers face obstructions in the work they do and at times have had to negotiate robustly with care managers, doctors, nurses and others. Many carers have had to purchase equipment which they found they could not get soon enough from statutory services.

    While in one sense at least this is quite unacceptable, it does seem to reflect the reality that this style of care is not necessarily well facilitated by statutory services. Each carer, however robust requires the support of others.

    Appliances

    A wide range of appliances is needed. Hospital beds which can be raised and lowered and adjusted are almost universally required.Cushions which will raise pillows effectively are important, and are often not provided.

    Walking frames, commodes, bath seats, wheelchairs showers (or even better, wet rooms) and many other pieces of equipment should be available when needed. Proper pressure relieving cushions for chairs are also important. Carpet cleaners help too!

    Later on hoists are required. Standing hoists (when the patient is suspended from a single point) should be obtainable from the NHS or Social Services but many people also need sitting hoists.

    So at times when hoists are needed for care at home, they need to be available on time: if the carer can no longer lift their loved one, they will end up in care as a result.

    Housing, Space and People Power

    Some patients have been cared for in large Victorian homes with large families and lots of people. Others have been cared for in one bedroom maisonettes and small cottages. It is therefore possible to provide the necessary style of care in a wide range of settings.

    An important principle is the willingness to alter the furniture of any setting. Space must be made to meet the primary need of bed, space for personal care, hoists and all the other pieces of equipment required.

    Space for people to sit around a bed is also very useful. Sometimes the happiest moments for patients appear to be when two to three people are gathered around a bed, where the patient can rest and where conversation about ordinary and normal things can continue.

    Obstructions

    Reluctant care managers, funding disputes, uncertainty about whether a person resides in the district where they own their home, or with the family with whom they are staying, and many other factors have led to apparent obstruction to the provision of care at home.

    Often enough it may be that care managers, doctors and nurses are fearful that patients will come to harm as a result of being cared for at home. And yet, dementia is a terminal illness.

    Surely in such a circumstances it is right to take some risks to put in place a care structure that the people closest to the person with dementia believe will make the quality of life better for their loved one.

    Care Workers

    Working out what carers need to do to help is crucial, and so is managing their work rotas.

    For example, it has been found that there are sometimes problems with flexibility when carers are commissioned by statutory authorities; a care plan gets written, and care workers may be reluctant or not allowed to work outside that care plan, or to vary what they do according to what is needed.

    It certainly is the case, for example, that if someone has just been to the toilet and a care worker then turns up with toileting on the care plan, and it is not necessary to re-toilet that the person, then other appropriate tasks that are needed at the time should be carried out instead.

    Many carers that we know have found that it is important to be substantially in control of the commissioning and designing of the care plan, to ensure that what is needed actually gets done.

    This has been achieved through a variety of different approaches, for example, by directly employing care workers, and this approach be helped by direct payments. Direct payments may mean that the key carer is given money which they can spend themselves directly to employ care workers.

    Hospital and Respite Care

    This may be needed in some circumstances, and sometimes is appropriate.

    Money

    The weekly cost of care at home is, for the majority of people, lower than the cost of care in a nursing home. That the quality of life is better is perhaps a more compelling reason for promoting care at home.

    It is however heartening to know that such styles of care do not, generally, provide an additional cost pressure upon local health and social services.

    Medication

    Opiate analgesia (pain relief) is needed for some patients. However, it is not frequently used and does not appear to be a mainstay of management of advanced dementia.

    Antidepressants are frequently used: there is a very high rate of depression in patients with dementia. Anti-psychotics are also important. The high frequency of psychosis in dementia, as well as the fact that behaviour problems in dementia are often driven by a psychosis which cannot be otherwise expressed, should not be forgotten.

    The evidence base for use of anti-psychotics is strong, in that some people with dementia who have distress and behaviour disturbance can respond very well to this medication.

    These drugs do however cause side-effects (including stroke): the question therefore is whether or not the risk of side-effects outweighs the benefit accrued by effectively relieving the torment suffered by the patient. In a palliative care setting it must be acceptable to use drugs that can harm to alleviate severe distress which cannot otherwise be managed.

    Antibiotics are important in some circumstances. Some antibiotics such as erythromycin and ampicillin are unpalatable and require larger volumes of liquid for about 20 doses. Others such as azithromycin only require four to six doses of low-volume medicine. This can be a real asset to dementia care when the patient is reluctant to take medicines.

    Similarly, antidepressants and anti-psychotics which dissolve on the tongue can be very helpful. At times medicines may be put in food.

    Anti-dementia drugs do not seem to be particularly useful. Memantine may help some of the behaviour disturbance.
  • Carers

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    Carers – What They Do and How to Feel in Control

    All people with advanced dementia need a carer to support them at home. They almost all need 24 hour supervision although it can sometimes be possible to pop out for an hour or so to get to the shops. Even for such short periods you will often need someone to sit in and keep an eye on them, or at least have some sort of remote control listening device linked to someone nearby.

    Once the main carer has been identified, the next thing to sort out is who does the extra support and how the main carer is helped and looked after. Sometimes the main carer may be someone with disability themselves. If they can direct and coordinate the work of others, people with severe physical disability have managed to make things work well.

    Paid carers usually need to be physically strong and are often therefore young. While some may seem harsh or unsympathetic there are very many wonderful, caring and compassionate carers who do excellent work.

    They may often be a bit unreliable at first – it takes time to get used to the needs of the individual and to get to know the set-up. After a while the less good ones often leave, while the good ones become indispensable friends and wonderful helpers in the work of caring.

    Carers can come from several sources:-

    • Via Social Service Care Managers
    • From care agencies
    • By private arrangement with the main carer

    Social Service Arranged Care

    These carers are arranged by Social Service Care Managers when the individual cannot afford to pay for the care they need out of their own savings. The benefit of this route is that all care is set up, properly contracted and all carers are employed by the council or care agencies and therefore have gone through security checks etc.

    The down side is that relatives often report that the care provided is not very flexible and that carers’ work cannot be varied to meet the varying day to day needs of the patients.

    For example, if the carers have been told to come and toilet the patient they may stick rigidly to this instruction even if the person has just been to the toilet, and will sometimes do that and nothing else. Once the care plan is finished they are gone.

    Care from Agencies

    Care provided by agencies, but commissioned through Social Service Departments tends to present the same problems as Social Service packages. However, if the carer pays directly for this kind of care, it does tend to be more flexible, and there is more scope to meet the individual needs of the person concerned.

    The hourly rate is higher than that for private arrangements, as you have to pay the agency as well. But the carers generally do come with a management system and should have had police checks etc.

    By Private Arrangement

    This provides the best and most flexible care for some. One carer advertised in the local paper and had 50 responses, from which he was able to appoint several carers.

    By paying directly, you can vary the hours and work according to need, but you need to exercise judgement and caution, as these people may not have undergone the Police checks carried out on carers who are employed by Social Services or professional care agencies. There is therefore an added element of potential risk.
  • Comfort and wellbeing

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    Food and Diet

    Good food nicely presented regularly and often, cut up into small pieces is helpful. Dogged persistence is also important: it may take a while for carers to get the hang of dietary support. A number of carers have found some particular “secret weapons” e.g. Guava juice is high in calories and it doesn’t seem to be acidic. Thickened soups, peanut butter sandwiches and chocolate baby foods have all been found by some carers to be particularly helpful.

    One particularly important point is to remember that people with advanced dementia too often seem to have days when they don’t particularly want to eat. Carers can be very worried about this, we often think that if someone does not eat three meals a day they are getting ill.

    We have found that if the patient does not want to eat and cannot be encouraged to do so without conflict and stress, it is often the best to just leave them be. If they don’t eat one day they will often need a bit more the next day. Taking this approach may cause some trepidation because carers may feel the patient will die more quickly from poor nutrition. In fact, we have generally found it is not the case. Patients have lived a considerable length of time after this more relaxed approach has been taken.

    The Compromised Swallowing Guide produced by the Peterborough Palliative Care in Dementia Group is now (August 2010) available. Because it is available via several sites, to find it, Google ‘Compromised swallowing a practical guide’. It is primarily produced for healthcare professionals but contains a lot of practical information which may be of help to carers of people with advanced dementia who have difficulty swallowing.

    The Experience of One Carer

    Mum’s appetite was always problematic and she lost lots of weight. Food became a huge issue between us. I equated food with life and I was watching her fade away. Enter the dietitian and the food supplement drinks, disgusting, but Mum had had them before so I was able to introduce them but she would only take them from me.

    In September 07 Mum stopped eating and would never eat again. Reassured by the dietitian I was able to accept it but it was to become an issue again later, but not with me.

    Mum was taken to A&E with a suspected stroke. She was dehydrated but became stable. Suddenly things changed, her blood pressure plummeted and her heart rate became even more erratic than usual. What we found out later is that she had had a small heart attack that didn’t register. The chest x-ray finally showed that she had pneumonia and wasn’t expected to survive. They asked about intervention and resuscitation. There was to be none. They said that they could try a pressure mask to ease her symptoms if she would be able to tolerate it. Basically though they were sending her to a ward to die.

    My sister decided to cover the nights while I did the days. I would get there early so I could wash her and give her the medication which by this time was mostly liquid. I knew that with the amount of fluids Mum had to have during the day the nurses would have difficulty doing it or would not really have enough time to do it.

    Mum’s not eating now become an issue again with some of the nurses. One of the nurses took me aside and asked if I would mind if she got the ward dietitian to assess Mum. She still couldn’t quite get that Mum didn’t eat. I had no problem with calling the dietitian in but I was not about to let anything interfere with what was clearly working.

    The dietitian who came was a breath of fresh air and although I didn’t know it at the time would become a great support. She looked over Mum and wasn’t at all worried about her fluid intake. Once she had seen Mum the nurses finally accepted it.

    Just under three weeks after being admitted and being told that she was not going to survive Mum was home.

    After a couple of weeks Mum couldn’t tolerate her drinks. The dietitian from the hospital, who was now in the community, called and she put Mum on some supplements and changed her drinks. The new regime worked and Mum gained weight and looked really healthy. The only problem was trying to get her to remain sitting long enough to give her fluids. It was such a struggle and overall it could not be solved.

    By the beginning of September Mum had deteriorated. She wasn’t talking anymore and always had her eyes closed. I could still get her to take her medication and drinks but it had become an all day job to get the required amount into her.

    After the horrendous experience at the hospital I now made the decision that Mum would stay at home until she passed away.

    Spiritual Support

    Perhaps the greatest spiritual need for patients is to feel loved and cared for by those whom they know and whom they value. Time spent sitting with a patient is important. It is essential to remember that a lack of response from the patient does not mean that what has been said or done has not been felt.

    Many people who recover from episodes when they could not respond can recall and retell what was said and happened with surprising accuracy. We have seen patients very close to death suddenly show evidence that they are aware (perhaps by making a sign of the cross or saying prayers) and other patients suddenly come out with lucid comments at times when they were not thought to be aware or hearing.

    The mere fact of being with someone having conversations with those around about day-to-day things is important and very positive for those with advanced dementia. Doing things at times of interaction is also important. Many people are not good at sitting doing and saying nothing. Feeding, personal care where possible and other activities are good things therefore for carers to do with their loved ones. Set prayers, reading from religious texts etc may be comforting. Specific prayers appropriate for those who are dying may also be helpful .

    Support From Specialist Teams

    We think that the complexities around the managing of complex and advanced dementia at home require a special approach. It is widely accepted that the Macmillan style approach of community teams supporting patients at home with cancer is right. Even though the components of care provided by Macmillan teams can normally be provided by others, it is well accepted that a specialist team does better.

    We believe that the same applies for dementia care. The challenges of managing complex and advanced dementia at home are significantly different from cancer care but the principle that a specialist team should coordinate services and the professionals is completely valid. We hope very much that we will see the creation of such teams and research into their effectiveness in the near future. A professional who is known to the patient and carer, and who will visit and monitor proactively has been strongly identified as a requirement by our research. Reactive visiting by primary care and others at times of crisis is simply inadequate.

    Dying in the Most Appropriate Place

    If it can be done, the terminal care of dementia at home is a good idea. It appears to be for some, a better way for the patient. Dying people can continue to provide connection and love for those around them up to the moment of death. Perhaps at home with the family death is more human experience. Perhaps also bereavement for those left behind becomes a more gentle and better experience.

    Terminal care of dementia at home is not suitable for all and should not be considered as the only way. Residential and nursing care is needed for many people and there are times during an illness when people will require a different sort of care. We believe that it requires specialist teams although at the present time many are having to do this without any support of a co-ordinated nature.

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