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International Symposium on Elderly Care
2nd(1991) Elderly Care with Dignity


Part.3 PRESENTATIONS
SENILE DEMENTIA CARE IN THE COMMUNITY AN EXERCISE IN CARING

General Practitioner; Fellow of the Royal College of General Practitioner; Fellow of the Royal College of Surgeons. U.K.
John Fry, M.D.



We are all facing a major socio-medical crisis with an aging population that includes increasing numbers of elderly persons suffering from brain failure, or dementia.
If we are able to manage the situation we must analyze and examine it logically and consider care in the community that is effective, efficient and economic.

1. WHAT IS IT?
Whilst we can diagnose "senile dementia" through symptoms and questionnaires, nevertheless its causes are uncertain, and therefore there is no specific treatment or prevention.
At present two aetiological subgroups are recognized: Senile dementia from multi-mini-strokes and Alzheimer's disease, an eponymous label that is also used euphemistically to avoid the socially demanding word "dementia."
We know that it is a condition associated with the aging process, but it is difficult often to distinguish clearly between the graduation from normal to abnormal or to forecast the course and progression with its uncertain spectrum and natural history.

2. WHY IMPORTANT?
Its importance is by reason of increasing number, as we live longer, and the wide range of social and medical problems that it creates.
With the number of persons over 75 increasing in all developed societies, the numbers of persons with senile dementia is bound to increase. Senile dementia knows no social divisions. It is equally distributed in rich and poor and probably the rates in developed societies are similar if comparable diagnostic criteria are applied.
・ senile dementia creates a range of problems -
- mental deterioration and its consequences
- increased liability to physical disorders leading to premature death
- social and medical difficulties in caring, both at home, in the community and in hospitals and other residential places
・ the problems are wide ranging -
- for the victim who becomes confused and unable to self care
- for carers within the family and outsiders who have to provide more and more round-the-clock care and supervision
- for the medical and social professions who are expected to organize care in difficult circumstances and with limited resources
-for the local community, society and health providers who are expected to pay for the services
・ ultimately, it has to be accepted that there is no known cure for senile dementia and that care and comfort are what is possible.

3. WHO GETS IT WHEN ?
Understanding of the epidemiology of senile dementia is essential as a prerequisite for care.
Reliable facts should be obtained locally and nationally and used as a basis for planning and actions.
Data from U.K. serves as an example -

(1) Age prevalence
Correlation of reports using similar diagnostic criteria suggests that the prevalence of senile dementia is Table 1.

Table 1 Prevalence of senile dementia in U.K.

(2) Population
The population of U.K. is 57.5 million (1991)
As you can see Table 2, 15.6% of the population is over 65. It is predicted that the numbers of elderly (over 65) will increase by almost one-third in the next 30 years in U.K.

Table 2

(3) Numbers
In planning, attention has to be given to numbers and to the services required to meet needs.
There are 4 essential levels of care in every health system -
・ self care within the family
・ primary professional care in the local neighborhood provided by general medical and social services
・ secondary specialist services at the district general hospital
・ super-specialist regional units
In the British National Health Service (NHS) recent trends have been for the general practitioner (GP) who provides primary first contact care to work in groups of GPs (5 is the mean size). Each group is supported by a practice team of office staff, nurses and social workers.
Some details (in 1991) -
・ There are 30,000 GPs
・ There are 8,000 group practices
・ Each GP has an average of 2,000 patients
・ Each group has 10,000 patients
・ The local district general hospital has a population base of 250,000
Therefore, the numbers of senile dementia patients that can be expected will be shown in Table 3.

Table 3 Numbers of senile dementia

These are the numbers of persons with senile dementia for whom planning for care has to be considered at each level of care. Note that 1 in 40 of family units can expect one member with senile dementia; a GP will have 20 cases; a group of GPs will have 100 cases; a district almost 2,500 cases; and the United Kingdom over 1/2 million cases.
However, not all persons with senile dementia are equally severe -the proportions of severe, moderate and mild are as shown -
・ Mild 60%
・ Moderate 30%
・ Severe 10%
This means that the numbers of severe cases will be -
・ per GP 2
・ per Group 10
・ per District 240
・ per U.K. 54,000

4. WHAT HAPPENS ?
The natural history of senile dementia is not one of inevitable progression. Some, the majority, (60%) remain "mild" and relatively few (1 in 10) end up as classical "severe" and completely demented. However, there are no predictable prognostic features. Therefore, only a small proportion of persons with senile dementia will re-quire total care, but all will require some degrees of planned care and su-pervision.
The life expectancy of once diagnosed senile dementia is much reduced. to only one-quarter of that expected. They have increased liability to die from all causes. It is an ethical dilemma to decide how much intensive care should be provided at times of illness.

5. WHAT CARE ?
This has to be an exercise in caring. that will test the moral and ethical standards of any system. At times it is not easy or pleasant. but good care of senile dementia is as challenging as that for terminal care for any other non-curable conditions.
To be effective. efficient and economic. there must be planned policies at all levels of care ensuring the best use of available resources for all concerned.

6. WHAT TO DO AND WHY ?
Certain principles should be formulated and followed -
・ the victims with senile dementia should be cared for with humane dignity and individual independence, and enabled to live for as long as possible in their own home surroundings.
・ carers often suffer more stress and strain than the patients. Senile dementia results in a withdrawal from reality and victims live in their own worlds without much concern.
Carers at home. in the community and in residential homes and hospitals have their patience stretched and may become physically and men-tally exhausted. Carers must be given all possible support and assistance by mobilization of available resources.
・ large extended families are disappearing and have been replaced by small nuclear families of 2 parents and 1 or 2 children living away from elderly relatives and often with both parents in full time employment. It is unrealistic and unfair to expect families to cope without considerable outside assistance. At present in U.K. of all elderly (over 65)
・ 30% are living alone (45% of over 85 year old)
・ 40% are living with a spouse
・ 15% are living with children
・ 10% are in long-term residential care in hospital or nursing homes
・ 5% are living in other places
Those who live alone particularly are liable to suffer mental and/or physical crises and require more supervision and regular contacts.
・ once diagnosed, arrangements should be made for regular and continuing contact with all cases and families, such as home visits, or attendance at community units, to try to anticipate and prevent problems.

7. WHO AND WHERE ?
Good care requires a collaborative team approach with many and various persons and organizations involved at the various levels of care.
・ family and neighbor care and support must include material and financial assistance, and this usually requires considerable knowledge and experience of all the many grants and allowances available under Social Security arrangements. This requires a knowledgeable person to guide the family through a veritable bureaucratic jungle.
・ primary health care is provided through the general practice primary health team and through social care workers such as home helps, personal carers, meals on wheels, general social workers, community psychiatric workers and voluntary visitors, who can visit regularly and provide services.
・ within the community there are clubs and day centers for the elderly where they can attend regularly with arranged transport to bring them there and then return them to their homes.
・ specialized psychogeriatric services tend to be based at the local district hospital, but more and more now have satellite units in the community. They provide backup and advice for primary care services and aim to try and keep the patients in their homes and community and avoid removal to residential homes and hospitals.
・ residential care, however, may become necessary in sheltered (war-den) accommodation, nursing homes, or in hospitals for reasons such as assessment, respite admissions (to give carers a break) or long-term in-patient care for the severely affected.

8. HOW ?
Teamwork is essential if all the available services are to function well and in a coordinated manner. Within the team there bas to be good leadership and communications, and also regular training and updating of all involved.

(1) A model
In a system such as the British NHS there are a number of apparently disparate services involved in care for senile dementia, and there have to be good collaboration and coalescence of these.
・ psychogeriatric specialist units at local district general hospitals with satellite units in the community staffed by linked joint hospital workers.
・ general medical services provided by GPs (who are independent contractors) working from their own practice units in the community and with their own nurses and receptionists.
・ social workers employed by local authorities who are distinct from hospitals and general practice.
・ other services such as voluntary agencies, church, self help groups.
・ whatever the arrangements, it is essential that one key worker should be recognized and allocated as the link between the patient and carers and the services that are available. This can be a GP, a practice nurse or a social worker.
Each district has to develop its clear protocols and plans involving all carers. Ideally the specialists should act to set up a working group that includes representatives from other levels of care to produce these protocols and to arrange close working and understanding between all those involved.
The protocols must include recommendations on management and procedures for referral and admission to hospital and other places.

(2) The New Contract for general practice
It is in the community that most care has to be given, and in the British NHS it is in general practice.
With the New Contract of 1900, organization of care has been made easier since it includes -
・ annual checkup of all persons over 75 years by doctor or nurse to include physical, social and mental functions.
・ early diagnosis of senile dementia can be made together with re-ports from family or neighbors and use of standard simple tests of cognition.
・ a register of all diagnosed cases of senile dementia should be made and kept to ensure regular contact and report through home visits by practice nurse.
・ practice protocols for care should be produced by each practice and agreed and followed by all members.
・ regular annual practice reports and audits are required. The audit should include a list of all services that are available, and each patient on the register should be checked to see whether he or she is receiving all available care and to what benefit.

Thus, in the British NHS facilities exist to provide early diagnosis, supervision and care for ail grades of senile dementia. It has to be said that the quality of services varies depending on local initiatives and leadership.

10. CONCLUDING SUMMARY
Senile dementia provides an excellent opportunity to check on a health care system to see how it provides humane moral and ethical care for victims and carers with a non-curable condition with mental, social and medical problems.
It is a challenge to bring together in an orderly and collaborative manner available medical, social and voluntary services.
Each system has to devise its own model(s). In the British NHS recent changes have led to opportunities to create a better planned and organized system using -
・ teamwork and leadership involving all services
・ setting out plans and protocols for collaborative care and support
・ creating a register of known cases
・ using audit methods to check on quality of care and best use of available resources for individual cases
・ with the many and various services possible, it is essential that a key worker should be the personal link for liaison between the carers and patient and other services.





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