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CHAPTER11

PSYCHIATRIC HEALTH AND OLDER PEOPLE

PSYCHIATRIC HEALTH AND OLDER PEOPLE WITH LEARNING DISABILITIES

 SALLY-ANN COOPER

AN AGEING POPULATION

People with learning disabilities are an ageing population.   Whereas in the past few people with learning disabilities lived beyond childhood, the majority can now expect to reach middle or old age.  There are many reasons to account for this increase in lifespan.  In part it reflects the increase in lifespan that has been seen for the whole population over this over  century.  However, there are other factors that have had a greater impact for people with learning disabilities.  These include: access to medical treatments not available to them in the past e.g. surgery for congenital heart disease, antibiotics for chest infections; the move away from institutionalised living which potentiated spread of infection e.g. tuberculosis; better lifestyles and quality of care with the move towards care in the community and individualised programmes of care enabling better nutrition, health care and social fulfilment.  The figure is taken from a paper by Puri et al (1995), and cites studies which demonstrate how the average age of individuals at the time of their death has gradually increased in British learning disabilities hospitals during this century. A recent population-based study from New York State confirms an increase in lifespan by showing the mean age at death to be 66.9 years for women and 63.3 years for men with learning disabilities for the period 1984 – 1993, compared with 70.4 years for the New York State general population in 1992 (Janicki et al, In Press).

An increase in lifespan is occurring for all people with learning disabilities.  Certain groups of people with learning disabilities are still less likely to live as long as other people with learning disabilities e.g. people with Down syndrome and some other genetic syndromes; people with profound learning disabilities and multiple physical disabilities.  However, the lifespan of people in these groups is also increasing e.g. Janicki et al (In Press) found the mean age at death to be 57.3 years for women and 54.4 years for men with Down syndrome during 1984 - 1993.  Although the lifespan for all people with learning disabilities is increasing, the different life expectancies for specific groups means that older people with learning disabilities have different characteristics to younger adults with learning disabilities, which has a bearing on their health needs.

There are other inevitable differences between older and younger adults with learning disabilities. Older adults have had different life experiences and memories, will have had different treatment histories, and may have different expectations compared with younger adults.  Many will have spent some of their life - often many decades and from early infancy - living in institutions, as this was, in the past, the accepted model of care.  Educational opportunities in the past were often limited.  There may also have been less awareness of issues of exploitation and abuse and the consequences of stigma.  These factors affect the way our personalities develop and are incorporated into the person we become. As such they have an influence on the person’s vulnerability to, or protection from, psychiatric health needs in adult life.

In the UK, there are now more people with learning disabilities aged 40 years and over than there are children.  There have been case finding studies in e.g. the U.K., North America, Australia, New Zealand which have attempted to ascertain the number of older people with learning disabilities.  However it is difficult to draw comparisons across these studies, due to the differing definitions of “older” and of “learning disabilities”.  However, it is apparent that older people with learning disabilities are significantly increasing in number, and have health needs, some of which differ from those of younger adults with learning disabilities.  This trend will continue.

                PSYCHIATRIC HEALTH NEEDS OF OLDER PEOPLE

                               WITH LEARNING DISABILITIES

PREVALENCE OF PSYCHIATRIC DISORDER

Considering factors that increase a person’s risk for developing additional psychiatric health needs, reveals that there are theoretical reasons to expect older people with learning disabilities to have a high prevalence of such needs.  This is because they will have the usual risk factors that affect the whole population (e.g. family genetic predisposition to major psychiatric disorders; life events; physical illnesses associated with psychiatric needs).  However, they additionally have vulnerabilities due to factors associated with learning disabilities (e.g. behaviour phenotypes; association of epilepsy and brain anomalies with psychiatric health needs; adverse experiences in childhood such as institutional care which affect personality development and predispose to later psychiatric health needs; adverse social circumstances such as lack of choice, restricted social networks, lack of confidant, exploitation, abuse, stigma, poverty; developmental factors such as communication difficulties and patterns of behaviour related to the person’s developmental age such as headbanging and temper tantrums).  On top of these vulnerability factors, older people with learning disabilities have vulnerability factors related to old age (e.g. deterioration in cognitive health; deterioration in physical health and resultant frailty, loss of confidence and pain, which may affect psychiatric health; sensory impairments; bereavement and loss; further narrowing of social networks and activities).

Although there are reasons to speculate that many older people with learning disabilities will experience significant psychiatric health needs, there is little research data available to confirm or refute this.  The studies that do exist are difficult to draw comparisons between, as they have examined different groups of people and used different methods of assessment.  However some findings have been replicated across studies.  There have been four major study reports which have been population based (i.e. have avoided sample bias when including participants in the study), and have completed psychiatric assessments directly with all study participants (and their carers) using well described diagnostic criteria.  Corbett (1979) studied 402 people with learning disabilities in Camberwell, U.K., 110 of whom were aged 60 years or over.  Psychiatric diagnoses were recorded using ICD-8 criteria (World Health Organisation, 1968).  Lund (1985) studied 302 adults with learning disabilities living in Denmark, 94 of whom were aged 45 years and over; 27 of whom were aged 65 years or over. Psychiatric diagnoses were classified using DSM-III criteria (American Psychiatric Association, 1980).  Moss and Patel (1993) studied 105 adults with learning disabilities aged 50 years and over, who lived in Oldham, U.K.  They classified psychiatric diagnoses using DSM-IIIR criteria (American Psychiatric Association, 1987).  Cooper (1997a; 1997b) examined 134 adults with learning disabilities aged 65 years and over, compared with 73 adults with learning disabilities aged 20-64 years, living in Leicestershire, U.K.  Psychiatric diagnoses were classified using Diagnostic Criteria for Research  - ICD-10 version (World Health Organisation, 1993), with some necessary modifications, and Kettering/Leicester criteria for depression (Cooper and Collacott, 1996).

The studies show that dementia is a prevalent condition in older people with learning disabilities. The studies of Luanda (1985), Moss and Patel (1993) and Cooper (1997b) all provide similar prevalence rates when they are age-matched i.e. dementia occurs in about 22% of people aged 65 years and over, and about 12% of people aged 50 years and over.  These figures are much higher than those found in the age-matched general population. (Hofman et al, 1991).  Corbett (1979) did not describe rates of dementia in his study, but noted that it occurred at a higher rate than in the general population.  The lack of previous attention to this finding probably relates to the small number of older people with learning disabilities when compared to the whole population of people with learning disabilities, and the focus of considerable clinical and research interest  into the dementia of Down syndrome.  Down syndrome is known to be associated with dementia, with almost all over the age of 40 years having neuropathological changes similar to those seen in Alzheimer’s disease (Mann, 1988).  However, clinical dementia is not an invariable consequence of Down syndrome, with perhaps only half of all people with Down syndrome developing dementia by the time they have reached old age (Prasher, 1995; Collacott and Cooper, 1997; Holland et al, 1998).  In view of the shorter lifespan of people with Down syndrome compared with people with learning disabilities of other aetiologies, there are few people with Down syndrome in the group aged 65 years and over, and so the high rate of dementia in this older age group is not a function of the association between Down syndrome and dementia.

Generalised anxiety disorders are also prevalent in older people with learning disabilities, occurring in about 9% aged 65 years and over (Cooper, 1997a).  This study also found 15% to have behaviour disorders, which is similar to the combined generalised anxiety disorder and behaviour disorder rate of 23% reported by Corbett (1979) for his over 60 year old group.  A current (point prevalence) diagnosis of depression, was found in about 6% (Corbett, 1979; Moss and Patel, 1993; Cooper, 1997a) which was not overly dissimilar to the rate found in younger adults, although a higher proportion of older people have had a past episode of depression.  The prevalence of schizophrenia (about 3%), obsessive compulsive disorder, mania and autism was similar to that found in younger adults with learning disabilities. Lund (1985) found lower rates of anxiety and behaviour disorders than the other studies.  This may relate to the range of psychopathological items included in his data collection.  The studies of Corbett (1979) and Cooper (1997a) allow comparison of prevalence rates across age groups and suggest that psychiatric health needs are greater in older than in younger adults with learning disabilities, particularly when dementia is included. 

CHANGES THAT INDICATE A PSYCHIATRIC HEALTH NEED

As a general rule a change in the behaviour (adaptive behaviour or maladaptive behaviour) or wellbeing of a person with learning disabilities always indicates a health need, until proven otherwise.  Such changes may include the onset of a new symptom or a new behaviour, the exacerbation of a longstanding symptom or behaviour, or the cessation of a longstanding symptom or behaviour.  Challenging behaviour never has onset in older age, without there being an underlying health need (e.g. psychiatric illness such as dementia or depression, or physical ill health).  Consequently, when there is a change in an older person’s behaviour, this always requires referral for health assessment and treatment.  The onset of some symptoms may easily be recognised by carers as requiring referral e.g. a person complaining of hearing noises or voices when there is no-one in the room to account for them (auditory hallucinations), or a normally calm person developing episodes of seemingly unprovoked aggression.  However, reductions in maladaptive behaviours can be just as significant in understanding and assessing underlying psychiatric disorders e.g. a person with Prader-Willi syndrome who starts to refuse food, or a usually boisterous person inclined to shouting who becomes socially withdrawn and quiet.

Assessment of change from that which is usual for the person is a key factor in psychiatric (and physical) health assessments.  Consequently, eliciting  background information from the past is essential in all psychiatric assessments. Although psychotic symptoms (delusions and hallucinations) are always abnormal and indicate the presence of psychiatric illness, they can occur in a number of different disorders and so require full assessment. Most symptoms may or may not be abnormal, depending upon the person’s usual state.  For example, for the person described in the above paragraph, the  onset of social withdrawal and becoming quiet indicates a health need, whereas for another person, being socially withdrawn and quiet may be their natural personality and indicate good health.  Amongst the general population, in the majority of cases, most symptoms may be considered to be indicative of ill health, whereas amongst the population of people with learning disabilities it is always essential to distinguish between state (i.e. new onset) and trait (longstanding) symptoms/behaviour.

An example that is often cited to highlight the importance of demonstrating change when undertaking psychiatric assessment, is that of dementia.  Assessing someone’s level of adaptive skills cannot on its own be used to assess for dementia, as people with learning disabilities have a wide range of baseline skill levels (depending on the degree of their learning disabilities - mild to profound, and the extent of their education, training and practise of skills).  Their current skill level has to be referred back to a previous reference level (i.e. the level they were functioning at prior to any change in skills being noted).  Some researchers have suggested that assessment  of change can only be undertaken prospectively, and consequently suggest that all people with learning disabilities should undergo psychometric assessment so that baseline information is available against which reference may be made should the person develop problems at any time in the future!  Within existing clinical resources in the U.K., such a suggestion is clearly impractical, and indeed may be considered by some to be over-intrusive and in conflict with the principles of normalisation.  Health care is necessary for people noted to be losing skills, whether or not psychometric assessments have been performed in the past. With careful and detailed history taking by a skilled and trained professional, demonstration of change and unravelling of these issues can usually be completed.  Difficulties arise when current carers have not known the person prior to the onset of problems e.g. if the person has recently moved residential placements.  In these situation, it is important to trace further informants e.g. from previous residential or day-care placements.  Dementia is no different from other psychiatric disorders in terms of the need to reference the person’s current symptoms/behaviours back to their premorbid state.  This is equally true for the full range of psychiatric symptoms that are part of depressive, anxiety, manic, and psychotic disorders.  This approach is equally necessary when working with people with autism who develop additional psychiatric disorders. Experience in such approaches is an integral part of learning disabilities psychiatric training in the U.K.

Symptoms which occur commonly in several psychiatric disorders include loss of skills, increase in or onset of aggression, poor concentration and social withdrawal.  Determining the diagnosis can therefore only be made by a comprehensive assessment of all of the psychopathology (which involves asking directly about information not spontaneously volunteered, after the person and their carer/relative have finished describing their concerns); both positive symptoms and important symptoms which are found not to occur.

It is important that the older person with learning disabilities who changes in some way in their behaviour/symptoms or wellbeing, is referred to a health professional for assessment to treat (or exclude) a psychiatric or physical health need. When a carer or relative notices such changes, or has concerns about the person’s health, referral in the first instance may be to the person’s general practitioner or to a community learning disabilities team, depending upon the local service arrangement.

PSYCHIATRIC ASSESSMENT

Psychiatric assessment looks for patterns of symptoms/behaviours (referenced back to the person’s usual premorbid state), which is referred to as psychopathology.  The elicited psychopathology is then classified using a range of diagnostic criteria to form a descriptive diagnosis (i.e. a “shorthand” description of the psychopathology).  The descriptive diagnosis can have many underlying causes, and an integral part of psychiatric assessment includes differentiating the causes by assessing biological factors, psychological factors, social factors and developmental factors.  As well as asking the person with learning disabilities and their carer about the current problems and clarifying the psychopathology, the assessment also covers past psychiatric illnesses and treatment, physical health (including problems in the past and a current review of all medical systems), drug assessments, health within family members, personal history (an account of important aspects of the person’s life from birth through to the current time), their current social circumstances, developmental assessment (including the cause of the person’s learning disabilities) and details of any forensic problems.  Examinations include mental state and physical state, blood tests and sometimes other special investigations.  This approach is necessarily different from that of functional analysis, which will be familiar to some carers.  Psychiatric diagnosis cannot be made on the basis of what happened today, or what happened in this last week, without reference to additional information from the past.

Comprehensive psychiatric assessments often include professionals from different disciplines working together e.g. learning disabilities psychiatrists, learning disabilities nurses, psychologists, occupational therapists, social workers.  It is essential for these professionals to develop good relationships with the person’s carer/relative as well as the person with learning disabilities her/himself, as assessment is very reliant on information from the carer/relative, as indeed is the implementation of management/treatment care plans and evaluation of their effectiveness with subsequent revisions.

Further details regarding differences between the techniques employed in psychiatric assessment and management when working with someone of average ability compared with someone with learning disabilities are described elsewhere (Cooper, 1997c).

DEMENTIA

PRESENTATION OF DEMENTIA

There are a number of symptoms and signs that can occur as a feature of dementia.  A person with dementia will have some but not all of these symptoms, and so each person’s presentation may be slightly different.  Symptoms that might be noticed when a person starts to develop dementia include loss of daily living skills.  To start with this might involve the person requiring more prompting than previously required to complete tasks, or only half completing tasks that used to be completed.  All types of skills can be affected e.g. literacy, financial, dressing, washing, cleaning, cooking, communication, understanding, continence, feeding skills and social skills.  The individual may develop problems with their recent memory e.g. forgetting what they have done at work that day, or what they have just eaten, bringing the wrong bag or coat home or mislaying possessions. Memory from the more distant past, however, remains more intact in the early stages of dementia.  Sometimes the person will talk about the past as if it is the present e.g. talking about living with their parents although they may have died some years ago.  Disorientation for place and time may also occur. An example of this might include a person who used to find their way around at work becoming unable to do so, getting lost, or wandering off aimlessly into the street. A person who used to be able to keep time may lose track of time e.g. getting up in the middle of the night insistent that it is time to get dressed and go to work.  The person may become dyspraxic e.g. putting their clothes on back to front when this was a task they used to be able to complete accurately.  Judgement and decision making becomes impaired.  As the dementia progresses, the skill loss progresses.  The person losses the ability to walk and weight loss may occur. The person may develop neurological signs such as seizures, primitive reflexes and adopting a position when lying in bed of the head being slightly raised (psychogenic pillow).  The rate of progress of these symptoms is variable, and the first symptoms that are seen are dependent upon the person’s original level of learning disabilities (e.g. if a person has never been able to identify coins, then onset of dementia will not be associated with loss of financial skills).

Non-cognitive symptoms of dementia are also common.  They include psychotic symptoms, such as visual hallucinations of strangers in the house and persecutory delusions.  Auditory hallucinations can also occur.  Other common non cognitive symptoms of dementia include apathy, loss of energy, anxiety and agitation, aggression, loss of concentration, sleep disturbance and reduced social interaction.

Dementias are progressive disorders.  In case of dementia in Alzheimer’s disease, progress is said typically to be gradual, whereas in multi-infarct dementia it can (although not necessarily) follow a stepwise pattern.

TYPES OF DEMENTIA

Dementia is common in middle aged people with Down syndrome, and older people with learning disabilities of other causes.  Dementia is an age-related disorder (i.e. it increases in prevalence with increasing age), which can have several underlying causes.  The most common causes of dementia are Alzheimer’s disease (in which a particular pattern of changes to the brain tissue can be seen under the microscope) and vascular dementias (the commonest type of vascular dementia is multi-infarct dementia, in which the person experiences a series of small blockages in their brain blood vessels, resulting in a lack of nutrition to the brain cells). There are numerous other less common types of dementias.  The type of dementia that a person has acquired is determined by looking in detail at their psychopathology and psychiatric/medical history, examination and investigation findings.  However, the definitive diagnosis regarding the type of their dementia can only be made with absolute certainty after the person’s death, as it requires looking directly at the brain.

Dementia is also sometimes referred to as “reversible” dementia or “irreversible” dementia.  This distinction has become less useful with the ongoing development of management strategies for  both dementia in Alzheimer’s disease and vascular dementias, approaches to minimise vulnerability factors for dementia, and the fact that some dementias traditionally referred to as “reversible” can result in permanent cognitive deficits.  However, there is value in mentioning this method of distinguishing the dementias as it underpins the medical process when assessing a person who has developed the symptoms and signs of dementia i.e. the process of assessment is aimed at establishing the descriptive diagnosis of dementia and then determining its causes by screening out all possible factors that might be contributing to the descriptive diagnosis.  From this the management/treatment care plans are set-up to reverse as many of these factors as possible.

ASSESSMENT OF DEMENTIA

If a person with learning disabilities starts to lose skills, or develops any other changes as outlined above, it is important that they are referred for a comprehensive health assessment.  The purpose of this is to establish the descriptive diagnosis, determine its causes, and set up appropriate management/treatment care plans to maximise the person’s functioning (and reverse any “reversible” dementias).

Assessment includes taking a full history (as detailed above).  The psychopathology assessment includes all symptoms of dementia, but also of other psychiatric disorders which can mimic dementia e.g. depression and schizophrenia.  The review of medical systems includes questions about physical disorders that can cause dementias or “reversible” dementias e.g. symptoms of thyroid disease and other endocrinological disorders, epilepsy, hydrocephalus, focal neurological symptoms, symptoms of raised intracranial pressure, or other neurological disorders, symptoms of anaemia, respiratory disease, gastrointestinal disease, renal disease or cardiovascular disease (particularly any history of cerebrovascular accidents, hypertension, embolism), onset of or deterioration in sensory impairments, evidence of infection e.g. urinary tract infection or respiratory infection.  Other causes of acute confusion are also sought, and a drug review is a necessary part of this (as indeed it is in all psychiatric assessments).  The social assessment part of the psychiatric history may be of particular importance with regards to planning the person’s further care.

After the full psychiatric/medical history, a mental state examination, full physical examination and investigations are completed.  Blood tests are undertaken to exclude treatable conditions and always include a full blood count, erythrocyte sedimentation rate, urea and electrolytes, blood glucose level, liver function tests, serum vitamin B12 and red cell folate, thyroid function tests and, if indicated, syphilis serology.  A chest X-ray is usually performed, a mid-stream urine sample sent for microscopy and culture and often an electro-cardiogram is undertaken.  A CT or MRI head scan may be undertaken to exclude focal neurological lesions or hydrocephalus (but it is not possible yet to diagnose dementia from these scans, particularly in people with learning disabilities in whom abnormal scan findings are often found, related to the person’s underlying cause of learning disabilities).  Other investigations may be indicated, depending upon the findings of the above.

At the end of this process it should be possible to attribute a descriptive diagnosis to the person’s symptoms and signs, and when this is dementia, to have determined the probable causes and contributions made by various factors.  The next stage is to set-up the management/treatment care plans.

TREATMENT OF DEMENTIA

There are several important stages to the management/treatment of dementia.  This is often undertaken by several professionals from different disciplines working together.  It is essential that the carer/relative of the person is fully consulted and involved and their agreement to the plans sought, as well as that of  the person with learning disabilities.

Correction of any treatable disorders or problems

This depends on the findings of the assessment and might include e.g. correcting a thyroid disorder, treatment for anaemia, a hearing assessment and provision of a hearing aid, cutting very overgrown toe nails to aid walking and changing drug regimes to minimise drug side effects.  Correction of these problems helps to maximise functional ability.

Reducing vulnerability factors for dementia

A person with early multi-infarct dementia or a history suggesting high risk for developing this disorder might benefit from reducing risk factors by e.g. dietary considerations such as weight loss and cholesterol reduction, giving up smoking, relaxation and antihypertensive drugs to reduce blood pressure and regular treatment with aspirin.  Consideration might also be given to hormonal treatment, non-steroidal anti-inflammatory agents and anti-oxidants.

Treating non-cognitive symptoms of dementia

A range of treatment strategies might be employed for non-cognitive symptoms of dementia, depending upon their underlying cause e.g. aggression might be secondary to persecutory delusions or hallucinations, in which case antipsychotic drugs are indicated.  Alternatively, it may be due to severe anxiety disorders, when relaxation and distraction techniques as well as anxiolytic drugs may be helpful.  Dependent on the person’s level of learning disabilities, relaxation techniques may necessarily have to be semi-hypnotic approaches, or use massage, aromatherapy, bubble baths/foot spas, Snoezelen rooms or soft music.  If aggression is due to “catastrophic” reactions in which seemingly small events stretch the person to beyond the limit of their understanding and coping mechanisms, then the appropriate management is likely to be the provision of education and advice to the carer/relative in managing daily tasks and situations, together with offering adequate support/respite care.  Effective treatments can be offered for many of the non-cognitive symptoms of dementia, provided they have been adequately assessed.

Behavioural management of cognitive symptoms of dementia

Behavioural managements can be helpful and might include e.g. pictorial daily planners to help the person orientate themselves through the events of the day, labelling doors with pictures to aid orientation, use of pictorial communication boards, reminiscent groups perhaps using life story books.

Drug treatment of cognitive symptoms of dementia

This is a growing area, with further drugs likely to be available in the future.  In the U.K. at present two drugs are licensed for the treatment of dementia in Alzheimer’s disease. These are yet to be evaluated in people with learning disabilities and dementia.

Education

It is important to offer explanation to the person with learning disabilities and to their relative/carer.  This will involve explaining the diagnosis, discussion of the future and possible future care needs, and what support services are available.  The emotional impact of this information is likely to be such that several sessions may be required, and the pace that information is imparted should be gauged individually and with sensitivity.  If relatives/carers are well informed this may help their decision-making regarding future planning and may help them to feel more in control.

Carer support

Caring for a person with learning disabilities who is losing skills can be stressful, particularly when the person is a much loved relative.  Emotional support may be beneficial, such as a professional with whom to discuss feelings such as loss, and with whom to share concerns and fears.  Practical support is important e.g. establishment of regular respite care may be helpful.  Some carers/relatives find contact with voluntary organisation helpful, such as the Alzheimer’s Disease Society, Age Concern, and Mencap.  Some voluntary organisations provide useful leaflet information for carers, hold support groups where people in similar situations can share experiences, and provide care services.

Social aspects of care

As a person’s needs change, their support packages and benefits may require review and modification.  Opportunities for recreation and occupation are important, particularly if they allow the person the opportunities to practise skills in a supportive, non-threatening non-pressured environment (the longer skills are used, theoretically the longer they will be retained). Such opportunities are important to enable the person to continue to maintain a high quality of life.

OTHER PSYCHIATRIC DISORDERS

 Older people with learning disabilities can develop the full range of psychiatric disorders.  These can have onset during old age, or may be longstanding disorders (e.g. pervasive developmental disorders, behaviour disorders).  Special factors to consider in the assessment of such disorders in older people include whether presentation of psychiatric illness is modified by physical frailty. Within the general population there have been several research projects exploring different psychiatric presentations in older compared with younger adults, however similar research has not yet been undertaken amongst people with learning disabilities.

The treatment of psychiatric disorders amongst older people with learning disabilities also requires special consideration.  As people age, their metabolism changes which effects drug pharmacokinetics.  This often means that older people appear more “sensitive” to drug side effects.  Coexisting age related disease can also increase the likelihood of adverse reactions from drugs e.g. a person with dementia (even in the very early stages before this has been diagnosed) is more likely to develop acute confusional states (delirium) in response to many classes of drugs (including several psychotropic drugs).

Other management strategies e.g. behavioural interventions also need to be sensitive to the person’s age and physical health.  Many elderly people would not consider a trip out to a disco, night club, or being taken on a long shopping trip to be a reward (although some would).  Many older people would not welcome a hectic, noisy work placement (although some would).  Many older people might prefer to work and socialise with peers more of a similar age (although some would prefer mixing with younger people).

With these considerations in mind, the standard learning disabilities psychiatric management/treatment plans should be employed to meet psychiatric health needs when they occur in older people.

MEETING THE PSYCHIATRIC HEALTH NEEDS OF OLDER PEOPLE WITH LEARNING DISABILITIES

Previous work has demonstrated that there are barriers in accessing appropriate health care for people with learning disabilities (Wilson and Haire, 1990; Royal College of General Practitioners Working Party 1990; Howells, 1996; Mencap, 1998).  Regrettably these problems have been found to be more pronounced for older compared with younger adults with learning disabilities (Cooper, 1997d).  This includes older people being found to access less day care (in some situations through forced retirement from day centres against the wishes of the person, and with no alternative provision being made), less respite care, and less contact with social workers and health professionals (except chiropody).  This is despite the older individuals having greater health needs.

Younger adults with learning disabilities draw on many of their care needs with regards to residential care and day care from facilities specifically designed for people with learning disabilities (e.g. through the health service, social service, private care providers, charitable organisations).  In contrast to this, older people with learning disabilities draw on these services from a range of providers: some facilities are designed for use by adults with learning disabilities, other facilities are designed primarily for use by the older general population.  In both of these settings older people with learning disabilities will be in a minority.  There is the potential for inexperienced care staff in learning disabilities setting to inadvertently attribute health needs of the older person as “normal” in old age, and therefore not referring the person for health care. Similarly, inexperienced care staff in facilities designed for use by older people may inadvertently attribute health needs of the person with learning disabilities as a “normal” component of learning disabilities, and so not refer the person for health care. 

Solutions need to be developed for these barriers to health care. There is a need for educational programmes: health screening programmes may also be of benefit. Local services should consider the needs of older people with learning disabilities with a view to establishing a measure of local need and the means of delivering effective health care (Royal College of Psychiatrists, 1997).

REFERENCES

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Collacott, R.A., and Cooper, S-A. (1997).  A five year follow-up study of adaptive behaviour in adults with Down’s syndrome.  Journal of Intellectual and Developmental Disability, 22, 187-197.

Cooper, S-A. (1997a).  Epidemiology of psychiatric disorders in elderly compared with younger adults with learning disabilities.  British Journal of Psychiatry, 170, 375-380.

Cooper, S-A. (1997b).  High prevalence of dementia amongst elderly people with learning disabilities not attributable to Down’s syndrome.  Psychological Medicine, 27, 609-616.

Cooper, S-A. (1997c).  Learning disabilities and old age.  Advances in Psychiatric Treatment, 3, 312-320.

Cooper, S-A. (1997d).  Deficient health and social services for elderly people with learning disabilities.  Journal of Intellectual Disability Research, 41, 331-338.

Cooper, S-A., and Collacott, R.A. (1996).  Depressive episodes in adults with learning disabilities.  Irish Journal of Psychological Medicine, 13, 105-113.

 Corbett, J.A. (1979).  Psychiatric morbidity and mental retardation.  In: Psychiatric Illness and Mental Handicap (Eds. F.E. James & R.P. Snaith) pp 11-25.  London: Gaskell Press.

Hofman, A., Rocca, W.A., Brayne, C. et al (1991).  The prevalence of dementia in Europe: a collaborative study of 1980-1990 findings.  International Journal of Epidemiology, 20, 736-748.

Holland, A.J., Hon, J., Huppert, F.A., Stevens, F., Watson, P. (1998).  Population-based study of the prevalence and presentation of dementia in adults with Down’s syndrome.  British Journal of Psychiatry, 172, 493-498.

Howells, G. (1996).  Situations vacant: doctors required to provide care for people with learning disability.  British Journal of General Practice, 46, 59-60.

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Lund, J. (1985).  The prevalence of psychiatric morbidity in mentally retarded adults.  Acta Psychiatrica Scandinavica, 72, 565-570.

Mann, D.M.A. (1988).  Alzheimer’s disease and Down’s syndrome.  Histopathology, 13, 125-137.

Mencap. (1998).  The NHS - Health for all? People with learning disabilities and health care.  Campaign’s Department, Mencap: London.

Moss, S., and Patel, P. (1993).  The prevalence of mental illness in people with intellectual disability over 50 years of age, and the diagnostic importance of information from carers.  Irish Journal of Psychology, 14, 110-129.

Prasher, V.P. (1995).  Age specific prevalence, thyroid dysfunction and depressive symptomatology in adults with Down’s syndrome and dementia.  International Journal of Geriatric Psychiatry, 10, 25-31.

Puri, B.K., Lekh, S.K., Langa, A., Zaman, R., Singh, I. (1995).  Mortality in a hospitalized mentally handicapped population: a 10-year survey.  Journal of Intellectual Disability Research,  39, 442-446.

Royal College of General Practitioners Working Group (1990).  Primary Care for People with a Mental Handicap.  Occasional paper 47.  London: RCGP.

Royal College of Psychiatrists. (1997). Meeting the Mental Health Needs of People with Learning Disability. Part 2: Elderly People with Learning Disability. Council Report CR56. Royal College of Psychiatrists, London.

Wilson, D.N., and Haire, A. (1990).  Health care screening for people with mental handicap living in the community.  British Medical Journal, 301, 1379-1381.

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World Health Organisation (1993).  The ICD-10 classification of Mental and Behavioural Disorders: Diagnostic Criteria for Research.  World Health Organisation: Geneva.

Figure. Mean ages of death in U.K. learning disabilities hospitals (taken from Puri et al, 1995).

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