B R I T I S H J O U R N A L O F P S YC H I AT RY ( 2 0 0 0 ) , 1 7 6 , 2 6 ^ 3 1

Ageing and learning disabilityy As life expectancy has improved and, in

the developed world, birth rate has fallen,
the proportion of older people has in-
A. J. HOLLAND
creased. One striking prediction is that the
proportion of people over the age of 85 will
increase from 6% of those aged over 60 to
11%. In early old age there is a reasonably
predictable pattern of cognitive change, but
in this older elderly group the major
debilitating disorders, such as Alzheimer's
disease, become particularly prevalent and
lead to the potential for a significant in-
Background Ageing is a continuation The changing age structure of the population crease in disability among this group. Even
of the developmental process and is identified in childhood as having a learning in the developed world, there are differ-
disability imposes important challenges. ences between countries and between
influenced by genetic and other biological
These include ensuring that the development socio-economic classes in terms of life ex-
factors as well as personal and social of additional age-related disabilities can be pectancy. For example, those living in
circumstances. prevented and maintaining general well- southern Europe have among the best life
being and quality of life. This issue has arisen expectancy. This pattern changes with mi-
Aims To identify some key biological, now because of significant changes in the gration and changes in lifestyle. Epidemio-
psychological and social issues relevantto care of people with learning disabilities and logical studies suggest that, for example,
how ageing might particularly effect their improved life expectancy. `Ageing' diet and drinking habits have both positive
should be considered within the context of and negative effects. From a different per-
people with learning disabilities.
demographic changes in the population as spective there is also evidence that allelic
Method This selected reviewconsiders
review considers a whole, as some of these health and social variations at specific genetic loci (e.g.
issues will be directly relevant to the older apolipoprotein e) affect life expectancy
the extentto which there are similarities
population of people with learning disabil- and the propensity to age-related illnesses
and differences relative to people without ities. From a research perspective, the ques- such as Alzheimer's disease (Rubinsztein,
learning disabilities. tion of whether the biological process of 1995). So, as life expectancy has improved
ageing and its social and emotional conse- for people with learning disabilities, the
Results There is a convergence, in later quences differ for those with a learning above influences, and most importantly
life, between people with a learning disability needs investigation. the presence or absence of age-related
disability and those without, owing to the disabilities, become increasingly relevant.
Questions can appropriately be asked
reduced life expectancy of people with
AGEING: AN about the influence on the health and
more severe disabilities.People with
EPIDEMIOLOGICAL well-being of older people with learning
Down's syndrome have particular risks of PERSPECTIVE disabilities of diet, the opportunity to
age-related problems relatively early in smoke and the availability of health screen-
life. In the general population the importance of ing. We also need to investigate whether
`ageing', the potential for the development people with specific syndromes associated
Conclusions The improved life of additional disability and the economic with learning disabilities are particularly
expectancy of people with learning impact of these factors have received con- prone to age-related
age-related problems and to
siderable attention. There is no obvious dietary or other risk factors.
disabilities is well established.There is a
and universally accepted definition of `age-
lack
lackof
of a concerted response to ensure ing', and no accepted theory as to the sig-
thatthe best possible health and social nificant aetiological factors. Ageing is not Learning disability, ageing
care is provided for people with learning synonymous with life span (or life expec- and life-expectancy
tancy) but is clearly intimately related to When considering ageing and how it might
disabilities in later life.
it. What has received increasing attention affect people with learning disability, it is
Declaration of interest None. is the concept of disability-free life expec- important to appreciate that this term refers
tancy. Here the relationship between the to a highly heterogeneous group of people.
process of `ageing' and the associated risk These people all have evidence of delayed
of illness and disability on the one hand or abnormal early development together
and increases in life span on the other is crit- with significant intellectual and functional
ical. The key question is whether increases impairments, but they may differ markedly
in life span are inevitably associated with in terms of the cause, developmental pro-
a greater number of years of disability in la- file, nature and extent of the impair-
ter life, or whether `age-related disability' ments ± and like all of us, in their
can be limited to the last few years of life personalities and social backgrounds.
y
See editorial pp. 10^11, this issue. (Robine & Ritchie, 1991). While a history of delayed or abnormal

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childhood development is essential if the illustrates this. Age-specific prevalence of challenging behaviour) (Moss, 1991). In
label of `learning disability' is to be applied, rates of learning disability increase during Maaskant et al's
al's (1996) study, rates of epi-
this process of `development' should be early childhood as the extent of an indivi- lepsy were shown to be reduced in the older
considered to be lifelong and therefore con- dual's disability becomes apparent, but in people with learning disabilities when com-
tinuing into later life. At the most basic later life they diminish because of the pared with the younger ones. Importantly,
level, severe and profound abnormalities earlier death of those with more profound however, sensory impairments characteristi-
of early development have a marked impact disabilities. The extent to which physical cally associated with later life are found to a
on life expectancy and on age-specific disabilities contribute to age-related mor- greater extent in those people with learning
mortality rates. McGuigan et al (1995) dis- bidity in people with learning disability is disabilities aged over 65 (Janicki et al,
al, 1985;
cussed the complexities of investigating life well summarised in the review by Day & Evenhuis, 1995a
1995a,b). The various studies
expectancy among people with learning dis- Jancar (1994). The studies they reviewed indicate that in later life there is a con-
abilities. In their analysis of data taken all report increasing prevalence of muscu- vergence in terms of health and social care
from learning disability registers covering lo-skeletal, cardiovascular, respiratory and needs between people with learning disabil-
three London boroughs and including neoplastic illnesses with age. However, in ity and the general population.
births from 1896, they calculated standard- the case of some disorders (e.g. neoplasia), However, the study of age-related
ised mortality ratios (SMRs; the number of age-related increases in prevalence are rela- changes in older people with learning dis-
observed deaths divided by the number of tively small. The studies did not clearly abilities is complicated by the potential for
expected deaths) for the years 1982±1990. divide according to the level of learning very significant cohort effects; care therefore
The SMRs were found to be above unity disability. has to be taken when extrapolating from pre-
for both men and women with learning Maaskant et al (1996) undertook a pro- sent-day findings to the future. For example,
disabilities; in some groups they were sig- spective cohort study of 1602 people resi- mortality rates and educational opportu-
nificantly greater. The main limitation of dent in local facilities for people with nities were very different 60 years ago than
the study was that the numbers were in- learning disability, and looked for changes they are today. Infant mortality would have
sufficient to allow classification according in care dependency over three years. They been higher and neonatal care unknown. In
to severity or cause of disability. The cause found what might have been predicted: that particular, those people with more severe
of the learning disability is particularly rele- significant change over the period took learning disabilities who survived childhood
vant, because one of the groups most stu- place only in the younger group, who im- are likely to have been self-selected on the
died is people with Down's syndrome. In proved (people with Down's syndrome were basis of their ability to survive despite their
this syndrome the presence of trisomy 21 excluded), and in those over 60, who de- disability, and may well therefore have car-
not only affects the early developmental teriorated in terms of care needs. These and ried with them into adult life a robustness,
profile of the child but is also associated other studies indicate that at an individual the effects of which may continue into old
with apparent premature ageing and an in- level increasing age after 60 brings with it age. However, for most there would have
creased risk for developing Alzheimer's dis- the expected age-related impairments but, been a much greater chance of being placed
ease much earlier in life when compared as described earlier, older people with learn- into an institutional setting, while many
with people with other causes of learning ing disability when considered as a group may not have received formal education,
disability or with the general population. have higher levels of functional abilities which did not have to be provided until the
At biological, psychological and social than the younger group (and lower levels passing of the 1971 Education Act.
levels such observations raise profound To summarise, the main biological and
questions about the process of ageing, and Table 1 Estimates of age-specific prevalence of functional aspects of ageing are as follows:
the links between disorders of childhood severe intellectual impairment in an average English
development and later life ± and, most district of stable population in about 1990 (from (a) for people with learning disability as a
importantly, about the extent to which group, functional ability improves in
Fryers, 1991, by permission of Oxford University
people with learning disabilities have an in- later life because of differential
Press)
creased morbidity and mortality, and why. mortality rates leading to a shorter life
For the above reasons, the issues relat- expectancy for people with more
ing to ageing are more complex in the case Age (years) Prevalence severe learning disabilities and for
(per 1000 population) people with Down's syndrome;
of people with learning disabilities. While
old age in the general population is clearly
0^4 ?2.5 (b) age-related functional decline is
associated with increasing levels of disabil-
5^9 3.0 observed in people with learning
ity, this is not, contrary to expectation, the
10^14 4.0 disabilities in later life, as it is in the
case for people with learning disabilities as
15^19 4.5 general population;
a group. This is because there are differen-
tial mortality rates depending on the sever- 20^24 5.0
(c) care needs to be taken in extrapolating
ity of the learning disability. People with 25^34 4.0
from present studies of older people
more severe learning disabilities still have 35^44 3.0 with learning disabilities because of
a reduced life expectancy; therefore, across 45^54 2.5 the potential cohort effects due to chan-
the spectrum of disability, there is a less 55^64 2.0 ging patterns of childhood survival and
severe level of learning disability in the 65^74 1.0 improvements over the past 50 or so
group as a whole with increasing age 75+ very few years in educational and other opportu-
(Moss, 1991). Table 1 (from Fryers, 1991) nities available to younger people.

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AGEING AND THE MENTAL DEMENTIA AND ITS how the focus of research and service devel-
HEALTH OF PEOPLE WITH DIAGNOSIS IN PEOPLE opments has shifted because of the recogni-
LEARNING DISABILITY WITH LEARNING DISABILITY tion that age-related health problems of
later life are of particular significance. At
While the detection and diagnosis of mental Both of the studies mentioned above also the beginning of the 20th century, mean life
disorders affecting people with learning found significant rates of dementia. The de- expectancy for those with Down's syn-
disabilities can be problematic because of tection and diagnosis of this disorder are drome was less than 10 years, whereas it
the potential for impaired language particularly important, given its effect on is now nearer 50 years. Even so, the fact
development and the resulting difficulties cognitive and functional ability. Dementia that people with Down's syndrome were
in obtaining information on a person's is a disorder of later life which manifests at risk for developing the changes in the
mental state, it is clear that there are high itself in those areas of function that may brain (plaques and neurofibrillary tangles)
rates of specific psychiatric and behav- already be impaired in people with learning characteristic of Alzheimer's disease was
ioural disorders. Patel et al (1993), in disability. Furthermore, if people are lead- well recognised at that time (see Oliver &
one of the first studies to use the Psy- ing undemanding lives, the presence of Holland, 1986, for review). More recently,
chiatric Assessment Schedule for Adults functional decline may well go unnoticed, the focus of research has been to investigate
with a Developmental Disability (PAS± and any occasionally observed change may the extent to which cognitive decline and
ADD), investigated the prevalence rate of be dismissed as being `part of the learning dementia occur. Many studies have now
psychiatric disorder in a cohort of people disability'. This problem of `diagnostic confirmed that age-related cognitive decline
with learning disabilities aged 50 years or overshadowing', and of dismissing changes and dementia affecting people with Down's
more living in one health district. Of the in behaviour, personality or ability that syndrome occur 30±40 years earlier in life
105 participants, 12% had psychiatric would be taken very seriously in a person than in the general population. The pattern
disorders, and a further 12% had without a learning disability, are particu- of cognitive change observed in a propor-
dementia. The disorders identified were larly relevant with dementia. For this rea- tion of people with Down's syndrome is si-
mainly depression and anxiety. The authors son, an expert group was established milar to the cognitive course of Alzheimer's
commented that few of the sufferers were under the auspices of the ageing special in- disease in the general population ± for ex-
known to health or social services. In a terest research group of the International ample, memory is affected relatively early
more recent study (Cooper, 1997), 134 Association for the Scientific Study of Intel- and language relatively late (Oliver et al,al,
people with learning disabilities aged 65 lectual Disabilities to examine the issue (see, 1998). Age-specific rates of dementia begin
years or more living in one geographical e.g., Aylward et al,al, 1997; Zigman et al, al, to increase in the patient's 30s from 1±2%
area were assessed. A specially constructed 1997). These papers stress the potential dif- to 40% in the 50s (Holland et al, al, 1998).
psychiatric interview was used, and rates ficulty of diagnosis and suggest that greater There is also some evidence that personality
of psychiatric disorder of over 65% were emphasis should be placed on personality changes may precede more obvious cogni-
found (compared with 47% in the younger and behaviour changes as possible diag- tive changes in some people. With the onset
group). A large group was classified nostic characteristics in association with of apparent changes in either behaviour or
under the label `behaviour disorder', but evidence of functional change. functional ability, a key task is to identify
there were also significant rates of de- In a study of 101 people with learning a possible cause. Importantly, other age-
pression, anxiety and dementia. The author disabilities aged 50 and over that found 12 related changes also occur and may mimic
suggests a number of factors that might people with dementia, the presence of de- dementia; such changes include increasing
have accounted for the high rate. However, mentia was found to be associated with sensory impairments and thyroid disorders
as she points out, most factors were additional physical health problems and a (Prasher & Chung, 1996).
common to both younger and older groups. greater proneness to violence and behav- Although it was recognised over 100
Given that the psychiatric disorders seen in ioural problems (Moss & Patel, 1997). years ago that people with Down's syn-
excess in the older groups were those found The authors pointed out that it is not drome may get a `sort of precipitated seni-
in the general elderly population, it is likely simply the cognitive decline that is leading lity', the understanding of this relationship
that the ageing process per se and to functional decline, but a combination of was for a long time a largely neuropatho-
associated social changes are the most factors. Interventions need to be targeted logical one. Numerous studies reported
significant influences. The importance of not only on issues relating to the dementia evidence of plaques and neurofibrillary
the above two studies is that they used but also on those relating to physical health tangles in people with Down's syndrome
sound diagnostic methods to identify and environment. Dementia is particularly who had died in early adult life. Some stu-
important causes of age-related morbidity. relevant in people with Down's syndrome. dies retrospectively looked for evidence of
Clearly, the ageing process in people with This matter is covered in more detail below. decline and reported evidence of personal-
learning disability brings changes in the ity changes, functional decline and the pre-
rates of physical and mental health sence of neurological dysfunction (Oliver &
problems similar to those found in people THE SPECIAL CASE Holland, 1986). This was followed by cross-
without pre-existing developmental OF PEOPLE WITH DOWN'S sectional clinical studies, and later by more
disabilities. As happens more generally in SYNDROME robust data about the likely age-related
the field of learning disability, it appears prevalence of clinical dementia (i.e. Alzhei-
that the identification and subsequent treat- People with Down's syndrome illustrate mer's disease). The neuropathological stu-
ment of such disorders is often not taking most vividly how life expectancy has chan- dies seemed to indicate that everyone with
place. ged for people with learning disability, and Down's syndrome developed significant

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Alzheimer-like neuropathology as early as psychiatric disorders. It is also associated The social aspects of ageing are sum-
their 30s, yet as the clinical studies were un- with significant social and economic marised as follows:
dertaken it became apparent that there changes. It is perhaps in this aspect of age-
(a) differences in the overall structure of
were people with Down's syndrome living ing that there are some of the biggest con-
the life of a person with learning
into their 50s and 60s who were clearly trasts between those with and without
disabilities and the funding of social
not developing dementia. This apparent learning disabilities. First, for most of the
care lead to a failure to recognise and
discrepancy is now well established and re- population life is structured into infancy,
plan for retirement and to provide the
mains an important research issue. Clearly, childhood, working adult life and retire- necessary change in lifestyle when
there are factors which both increase and ment. For people with learning disabilities, required;
decrease the risk of developing Alzheimer's many of the expectations that people have
disease with age. The most striking is the of life are not available. The most striking (b) ageing is associated not only with the
influence of the Apo e alleles. The effect is example is work. Although supported em- increasing likelihood of the death of
the same as that found in the general popu- ployment schemes and more meaningful family members but also with the
lation, with the Apo e2 protecting and the daytime occupation are becoming avail- potential for the loss of knowledge
Apo e4 allele increasing the risk (Rubinsz- able to people with learning disabilities, about the past experiences of the
tein et al,
al, 2000). provision in this area remains seriously person with learning disability, espe-
The role of amyloid and excess amyloid deficient. Without work or its equivalent cially if he or she is unable to relate it
for him or herself (life story books are
production appears to be very significant in there can be no retirement. These issues
one way of trying to maintain that
understanding the increased risk for Alz- were well illustrated by Ashman et al
knowledge);
heimer's disease in people with Down's (1995), who investigated the employment
syndrome. The discovery that the amyloid and retirement status of people with learn- (c) as with the population generally, the
gene is localised on chromosome 21 came ing disabilities aged over 55 living in two experience of bereavement by people
about because of the known association be- Australian states. Many of those inter- with learning disabilities can be asso-
tween Down's syndrome and Alzheimer's viewed wanted to work or to have ciated with considerable behavioural
disease which suggested that chromosome worked, but the majority had never had and emotional changes that can go
21 may be a candidate site for an Alzhei- the opportunity. Another problem con- unrecognised, resulting in the person
mer's disease gene. It is also clear that there cerning retirement is that either the resour- failing to receive appropriate support.
is diffuse cerebral amyloid deposition start- cing of group homes forces people to go to
ing early in life and ultimately leading to a day centre during the day (and the SERVICES
plaques and tangle formation (Rumble et option of retiring and spending one's
al,
al, 1989; see also review by Mann, 1993). weekdays at home is not available) or if In a detailed paper for the Mental Health
Given that not all people with Down's syn- people are at home very little social activ- Foundation, Hogg & Lambe (1998) re-
drome develop Alzheimer's disease it would ity is available to them. In Ashman et al's
al's viewed the published literature on residen-
seem that excess amyloid expression cannot study the average number of weekly social tial services and family care-giving for
by itself account for the high risk of devel- activities for those people with learning older people with learning disabilities. They
oping Alzheimer's disease. Furthermore, disability who had retired was 2.7. pointed out that the numbers involved are
people with Down's syndrome still have a Also important are the ageing and not great. They emphasise that, at present,
reduced mean life expectancy compared death of family members and the life his- services for people with learning disability
with the general population (45 v. 75 years) tories of families. Increasing age for people remain inherently specialist and are predo-
and there has been no adequate explanation with learning disabilities is associated with minantly segregated from the mainstream.
for that fact, although the effect of in- the loss not only of family members but They point out that learning disability ser-
creased oxidative activity due to the pre- possibly also information about the person vices remain unprepared for the changing
sence of the superoxide dismutase gene on him- or herself. If a person has limited lan- needs of older people with learning disabil-
chromosome 21 or amyloid deposition guage, how can he or she know about his or ity and that generic services for the elderly
leading to Alzheimer's disease and prema- her past, likes and dislikes, wishes, etc.? A are not readily accessible. The `segregation
ture death are possible explanations. There key aspect of ageing is the preservation of v. integration' debate clearly applies to old-
remain important research questions that that knowledge, perhaps through the use er people. There are competing arguments
need to be addressed with respect to the of life story books and other means. The that may to some extent depend upon local
link between Down's syndrome and Alzhei- need for preparation for bereavement and and national differences in the funding and
mer's disease. The ultimate objective of for support after it in people with learning provision for both the elderly and people
such research is the development of treat- disability is now recognised and can be un- with learning disability. Much of the work
ments that prevent or at least delay the dertaken with the help of specially prepared on service provision for older people with
onset of dementia. books. A study by Hollins & Esterhuyzen learning disabilities has been undertaken
(1997) of 50 people who had experienced in the USA (Janicki et al,
al, 1995). For reasons
the death of a parent reported high rates of both non-discrimination and funding,
SOCIAL ASPECTS OF AGEING of subsequent behavioural disturbance and Janicki et al advocated the integration of
emotional distress which were often not services for the elderly, and reported con-
Ageing is, of course, associated with more recognised as being in response to the loss, siderable success. There is clearly a difficult
than just biological changes, cognitive de- indicating that in many cases bereavement balance to be found between supporting
cline and increasing risk of physical and is still not taken seriously. people so that they may remain in their

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 HOL L A N D

homes despite increasing infirmity and the

need for different types of support and staff
CLINICAL IMPLICATIONS
skills. In the UK, a further concern is that
services for the elderly may be less well re- & Health and social services need to develop joint strategies for ensuring that the
sourced than social care services for people
changing needs of older people with learning disabilities can be met.
with learning disabilities, and if so there
will be a decline in quality of life when a & Further research is required to investigate the influences on age-related morbidity
transition between these services is made. and mortality, particularly in those with more severe learning disabilities or Down's
The key health and social care service syndrome.
requirements of older people with learning
disabilities are summarised as follows: & The maintenance of the physical and mental health of people with learning
disabilities and the early detection and treatment of both physical and mental health
(a) the social care environment should be
problems are key responsibilities for primary and specialist health services.
responsive to the changing lifestyles
and social circumstances of later life LIMITATIONS
and acknowledge, when appropriate,
the place of retirement; it should also & A full understanding requires the integration of biological, psychological and social
look to establishing links with other research from both the ageing and learning disability literature; this has not been
services for older people in order to
achieved sufficiently.
meet the individual's changing needs;
& This review is selective and, given the limitations of available research, the
(b) health professionals familiar with age-
related health problems and the diag- conclusions have been influenced by personal experience and by work in local
nosis, treatment and management of services; they have not therefore been determined in a completely objective manner.
the health problems specific to later
& The review has raised more questions than it has answered.
life (e.g. dementia) should be available;
services should include general practice
support, mainstream health services
(e.g. for assessment of sensory impair-
ments) and additional specialist learn-
ing disability and elderly services; A. J. HOLLAND, MRCPsych, Section of Developmental Psychiatry, University of Cambridge, Douglas House,
18bT
18bTrumpington
rumpington Road, Cambridge CB2 2AH
(c) carers and health and social care provi-
ders should acknowledge the need for (First received 12 July 1999, final revision 17 September 1999, accepted 21 September 1999)
emotional support for people with
learning disability whose family cir-
cumstances change (e.g. through
bereavement) and recognise the import- ACKNOWLEDGEMENTS _ (1995b) Medical aspects of ageing in a population
(1995b
with intellectual disability: II. Hearing impairment. Journal
ance of helping people with learning
I thank Robbie Patterson for her administrative and of Intellectual Disability Research,
Research, 39,
39, 27^33.
disability to retain knowledge of their
secretarial support and Bonnie Kemske for reading Fryers, T. (1991) Public health approaches to mental
past and of their families. the preliminary manuscript. retardation: handicap due to intellectual impairment. In
Oxford Textbook of Public Health (eds W.W. Holland, R.
In this paper it has been argued that
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