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.
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.
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 poeple closest to the person with dementia believe will make the quality of life better for their loved one.
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 toiletting on the care plan, and it is not necessary to re-toilet that the person, then other appropriate tasks that are neded 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.
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.
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.