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Should Alzheimer Patients be placed in Residential Care?

Introduction

            Alzheimer's disease (AD) is the most common form of dementia among older people which initially involves the parts of the brain that control thought, memory and language that seriously affects a person's ability to carry out daily activities.  Although scientists are learning more every day, right now they still do not know what causes AD, and there is no cure.  Additionally, it causes progressive irreversible damage to the brain and usually leads to death within a few years of its onset.  Its cardinal symptoms are loss of memory followed by a more general impairment in mental functioning and disturbance in behavior.  It is increasingly common with age, so that about a third of those over 90 years old will be affected (Encarta 2005).  

            Memory impairment in old age has long been recognized as common, but until about 30 years ago was usually regarded as a normal part of the ageing process (senescence).  In the 1970s, post-mortem studies of the brains of older people who were senile when they died revealed the microscopic appearances of Alzheimer's disease, which up until that point was believed to be a rare condition afflicting people between 40 and 60 years of age.  Largely ignored by medical researchers in the past, Alzheimer's disease is now the focus of numerous public and private research efforts worldwide, with attempts underway to identify causal factors, preventive measures, treatments and even cures (Draper, 2004).

Occurrence

            Alzheimer's disease is rare before the age of 60.  In those aged 65-70 years, about 1-2 per cent have it, and the proportion of persons with Alzheimer's disease approximately doubles for each successive 5 years of age, such that by the age of 90 about 30 per cent have Alzheimer's disease.  The proportion of elderly people in the populations of developed countries has risen dramatically as life expectancy has increased and, as a result, the numbers with Alzheimer's disease are very large and still growing.  In the UK there were about 600,000 people affected by the condition in 2000, but the number in 2050 is projected to be 1.1 million.  For the United States the figures were about 2.5 million in 2000, projected to rise to 8 million in 2050.  The number of new cases that arise each year in the US is predicted to rise from about 400,000 in 2000 to 1 million in 2050.  In the future, similar effects will be seen in developing countries as life expectancy there increases (Encarta 2005).

 

Symptoms

The symptoms of Alzheimer's disease vary between individuals but there are certain common features.  The disease is usually first noticed by problems with short-term (recent) memory that may initially be put down to the changes of normal ageing.  The next stage of the disease is characterized by changes in the activities of everyday life that immediately become obvious to those around the person.  The final stage is one of complete dependence, when the person often stays put for many hours at a time and needs constant care and support. Memory loss is often total with the upsetting result that the spouse or child is no longer recognized. Physical changes may become apparent. Eventually, the sufferer cannot cope with common infections and may die from pneumonia or a urinary tract infection. This phase lasts about two years.

 

Causes of the disease

Alzheimer's disease is quite distinct from normal ageing; it is a true disease. Like other common diseases, both inherited genes and acquired non-genetic factors may contribute to the disease.

            The common, multi-factorial form of Alzheimer's disease includes a genetic element but, equally important, it requires the exposure of a person to one or more non-genetic risk factors before the disease develops. These factors might be chemicals in the body, such as hormones, or factors in the diet or in the environment. Some of the factors that have been claimed to be associated with Alzheimer's disease are previous head injury, low education, high blood pressure, and insufficiency in vitamins such as E, B12, or folic acid.

 

Drug Treatment

            Tremendous advances have taken place over the last five years in the drug treatments of dementia.  Yet what has been achieved is merely the tip of the iceberg; much more research will be needed before a cure can be proclaimed for any of the dementing disorders.  Current treatments are aimed at ameliorating the symptoms of dementia rather than targeting the underlying causes.  Except for a few treatments for specific disorders, current available drug treatments are used across most types of dementia.

All drugs have side-effects of some sort; in people with dementia increased confusion is common.  As the number of drugs prescribed increases, the risk of confusion also increases.  Drugs that are used in the treatment of dementia may take many weeks to show a positive effect, so providing there are no obvious side-effects, it is important to give each treatment an adequate trial. However, where a drug causes significant side-effects before a positive effect can be determined, it is probably best to discontinue it.  In making such a decision the potential, and often intangible, long-term benefits need to be considered, and the decision is not always easy.

 

Families and other carers

Dementia has an enormous impact upon family and friends.  Living with a person with dementia is often very stressful, particularly as the dementia progresses into the moderate and severe stages, and personality and behavioral changes become more apparent.  Observing the gradual decline of a loved one from a competent individual to an incompetent dependent can be a harrowing experience.  Depending on the type of symptoms that predominate, the early impact of dementia upon family and friends is quite variable.  There is little doubt, however, that spouses and others living with the dementing person experience the greatest impact, added Draper (2004).

 

Community Care Services

Most people with a terminal illness would probably prefer to live at home until they die.  Most families would probably prefer to look after their disabled relatives for as long as possible at home.  However, because dementia is such a slowly progressive condition, by comparison with illnesses such as cancer, the time frame over which care needs to be provided is very long.  Without a strong community care system, most families and other carers are ineffective in their efforts to look after the person with dementia at home.

            Apart from setting up the forerunners of the current Aged Care Assessment Teams (ACATs) in Australia, the organization has also set limits on the number of nursing home beds that were to be funded.  The four basic philosophical principles underpinning the review were the following:

  1. to provide support to older and disabled people in their own homes;
  2. to provide residential services to older and disabled people only where their needs are not appropriately met by other support systems.
  3. for services to have a rehabilitation focus to restore function in a manner that develops and enhances personal freedom and independent functioning; and
  4. to recognize that for many older and disabled people, less supported residential services or community-based support services will be a possible and desirable outcome.

 

 

Residential Care

Most people with dementia will be placed into residential care in the moderate—severe stage of their illness, despite the best efforts of carers and community services to support them at home.  Carer stress is one of the major factors leading to the breakdown of community care, and this in turn is often related to the behavioral aspects of the dementia.  Other factors include the demands of physical care, the health of the carer and the availability of community support.  If the dementing person lives alone, placement is likely to come sooner, as it is very difficult to provide overnight supervision in a community setting.

 

Why does placement into residential care occur?

Placement in many circumstances occurs because insufficient professional and non-professional community support is available to alleviate the pressure on carers or to look after a single dementing person in their own home.  The reason behind insufficient community support is principally economic. Although residential care is very expensive, the cost of providing safe, quality, home based care to people with severe dementia is even more expensive.   Most people with severe dementia require 24-hour supervision and it is often the overnight care that is the stumbling block.  The cost of community services that can provide this level of supervision is huge.  Some wealthy people are able to afford it but the average person cannot.  Residential care in this situation is really an economic solution to a difficult problem.  This doesn't mean that we shouldn't be trying to further increase the community services that are available.  At this stage, the actual point at which community service provision becomes economically unviable for quality care has yet to be determined.  However, it should also be recognized that for some carers no amount of extra support will ever allow them to cope with the dementing person at home.

 

Preparation

Placement into a residential aged care facility is often a very stressful process for carers and the dementing person.  Very few dementing people will go by choice.  In Draper's experience, the majorities of older people who are keen to go into residential care are clinically depressed and feel that they are an unwanted burden on their family.  Others seem agreeable to the placement and don't make a fuss, but usually they are quietly unhappy about it.  Some will be vocally adamant that they will not go into 'a home'; at times a guardianship order will be required to provide legal authority for the placement against the dementing person's wishes.

Some steps can be taken in an attempt to minimize the stress for carers and sometimes for the dementing person.  Carers are advised to plan ahead from a reasonably early point in the dementing process by finding out about the various facilities in their area.  All facilities are prepared to show people around, though usually by appointment.  Usually it is just the carers who have a look, but occasionally an insightful dementing person may wish to participate in the decision making.  Some facilities allow names to be placed on a waiting list even when there is no immediate plan for placement, but most request that there be a valid ACAT assessment before doing so.

In Australia it is essential to obtain an assessment from an ACAT to determine the dementing person's eligibility for residential care.  There are basic criteria of day-to-day function that determine whether a person is disabled enough for residential care and the type of care required.  All persons with moderate dementia would be disabled enough to qualify for residential care, but this doesn't mean that they need to be placed because carers and community services are able to support many at home (http://www.health.gov.au).

 

Choosing the "best" facility

This is very difficult and often local availability is the main factor.  If the dementing person is from a non-English speaking background, and particularly if they speak little English or have very strong religious or cultural beliefs, a facility that specifically caters for these needs is advisable.  As there are relatively few such facilities, this may well mean that families will have to travel a significant distance to visit the dementing person.

Otherwise choice should be guided by three factors—facility condition and design, staff attitudes and knowledge, and the particular needs of the dementing person. Advice from the health professionals involved in the care of the dementing person (GP, community nurse, geriatrician, psychogeriatrician) should assist in the process.  Sometimes a particular facility might appear excellent, but the health professionals may advise that it does not meet the dementing person's needs.  If it is very important to the dementing person or the carer to maintain their long-term GP, check which facilities they visit.  Quite often a new GP will be needed when entering residential care, however.

Preparation also includes psychological adjustment to the placement process.  For many carers, placement is seen as an admission of failure; they feel that they have let the dementing person down, that they are selfish, that they are abandoning their loved one.  These emotions are understandable but in most circumstances are not accurate reflections of what has been happening.  Carers may have to work through these emotions with a counselor to avoid inappropriate self-blame from developing.  Other carers are able to see that they have done as much as they can to look after the dementing person at home and are able to focus on the next step.  Research shows that most carers adjust to the placement and after about six months are much less stressed than they were beforehand.

 

Requirements of good residential care

There are two main requirements of good residential care.  The first involves the delivery of quality professional health and personal care.  The second involves ensuring that the residential care environment is as 'home like' as possible without compromising safety.

Professional health and personal care

The attitudes, knowledge and skills of the staff are probably the most important asset of any aged care facility.  The delivery of quality care requires well-trained staff who have a positive attitude towards older people with dementia and respects their rights.  These two aspects of personal care—quality care and protection of resident rights—form the basis of residential care standards in Australia (http://www.health.gov.au).

Facilities vary in the level of professional supervision and personal care they provide.  It is important for residents to retain as much autonomy as possible, so the degree of professional involvement varies according to functional need.  Some facilities are intended to provide minimal levels of professional involvement for people who are functionally independent with limited supervision, while others are set up to provide high-level care for people fully dependent in their activities of daily living such as bathing, feeding and toileting.

 

Facility design and atmosphere

For many years, residential care design seemed to have been dictated by staff and administrative considerations rather than by the needs of residents, and so many facilities was sterile and institutional.  Thankfully, designs over the last fifteen or so years have improved considerably, with a better balance being achieved between the needs of staff, administrators and residents, though costs often limit what can be done.  This has been partially driven by more vigorous government standards for nursing home design, but also by the belated recognition that aged care facilities are the residents' homes.

 

Design features to assist in the care of people with dementia

One of the more important aspects of design is for it to be 'home-like'.  The problem is that people come from diverse backgrounds and home conditions, thus there isn't a single design that fits all.  This is amplified by our multicultural society, where the cultural traditions of different ethnic groups may be best met either by facilities specifically designed for one group, or by sections of a facility being set aside for a particular group. Other reasons for needing culture-specific facilities include language, food, religion and other traditions.

Another design feature touted for dementia is 'age appropriateness', whereby the facility is intended to remind the dementing person of their younger adult days through the colour schemes, fittings and furnishings, on the presumption that this will put them more at ease. The dilemma here is that there may be a 30-year age spread among residents in the one facility, so its design might have to incorporate the era from the 1920s to the 1950s, a period in which many home changes occurred (Morley & Flaherty 2002).

Conclusion

            Although lots of support systems are available for the care of Alzheimer patients, residential care system outlandishly proves to be the best.  With the breakdown of community care due to the earlier-stated factors, people with dementia will be placed into the residential care.  Moreover, such cases demands physical care, health of the carer, and the availability of community support which is far less intensive than the residential care system.

            While it has been mentioned that only very few people go by choice in the residential placement, carers are having a hard time coping with it.  Most people feel that they are discarded from their families while some are holding back their unhappiness for it.  Therefore, carers in the residential care system not only prepare for the appropriate facilities but have to also work through different emotions of their patients.

            The delivery of quality professional health and personal care is greatly required as a good residential care.  An experienced and well-trained staff practically knows everything that accounts to the care-giving of a patient.  This makes it a solid ground for the treatment of people with dementia in a residential care.

            Notwithstanding the fact that residential care is very expensive, it would be much more costly providing safety, quality, home based care to the patients. 

 

 

REFERENCES

 

 

Draper, B. (2004). A Guide to Alzheimer's Disease and Other Dementias. Crows Nest, N.S.W.: Allen & Unwin.

 

 

Department of Community Services and Health Nursing Homes and Hostels Review, Australian Government Publishing Service, Canberra, 1986.

 

 

Australian Department of Health and Ageing Aged Care Assessment Program Operational Guidelines. Retrieved February 4, 2006, from http://www.health.gov.au/acc/acat/ acapopgu.htm

 

 

Australian Department of Health and Ageing Residential Care Manual. Retrieved February 4, 2006, from http://www.health.gov.au.

 

 

Morley, J. E. & Flaherty, J. H. (2002). 'Putting the "home" back in nursing home' Journal of Gerontology: Medical Sciences, 57A(7), M419–21.


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