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Leeds Community and Mental Health Services (Teaching) NHS Trust, High Royds Hospital, Menston, Near Ilkley, WestYorkshire LS29 6AQ
Leeds Health Authority
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Abstract |
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A health needs assessment was undertaken to evaluate current provision and to help inform the future development of services for people under the age of 65 years with dementia in Leeds.
RESULTS
The prevalence rate for early onset dementia in Leeds was found to be 42 per 100 000 aged 30-64 years, and 78 per 100 000 aged 45-64 years.
Four main gateways for specialist investigation and care were identified and 38 referral pathways were identified in total. Carers had difficulties accessing information and services and they, along with the patients, valued, in particular, both the coordinated service provided by the specialist early onset dementia team and the dedicated day care facility available in Leeds.
CLINICAL IMPLICATIONS
Younger people with dementia can have very different needs to older people. The prevalence rate and the experiences of carers and patients clearly justifies the existence and further development of a specialist early onset dementia service. Such a service should provide a single gateway to coordinated service provision and ensure continuity of care. It should provide sufferers and carers with information, advice and expertise.
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Introduction |
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TopAbstractIntroductionThe studyFindingsDiscussionReferences |
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To help inform future service development a health needs assessment was undertaken in 1997 in order to:
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The study |
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TopAbstractIntroductionThe studyFindingsDiscussionReferences |
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The three entry criteria for cases were:
Data were collected for the period from 1 June 1994 to 1 December 1997. Those who had died or were no longer residents of Leeds were excluded from the analysis.
The study also consisted of a postal survey of carers and semi-structured interviews with patients, carers and professionals from health and social services and the voluntary sector.
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Findings |
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TopAbstractIntroductionThe studyFindingsDiscussionReferences |
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There was an uneven geographical distribution of cases, with a concentration in the South and West of the city. There were no obvious explanations for this phenomenon; there was, for example, no link between this geographical distribution and residential placements, age, diagnoses or indices of social deprivation.
The onset of dementia: before diagnosis
The median age of onset for symptoms was 55 years (range 25 to 64 years).
Nearly 60% of the main sample (67/112) sought medical help within 12 months of
the onset of symptoms. Just under 20% waited for between 1 and 2 years before
seeking help and 10% contacted their general practitioner (GP) only after 2-3
years. For most, the forgetfulness, problems with reading and writing,
aggression, instability and sleep disturbance were often regarded as temporary
exacerbations of character, depression or reactions to stress either at home
or work. Most sufferers or their relatives only contacted their GP after a
significant event in their lives.
Referral and diagnosis
Four main clinical gateways of referral for specialist investigation were
found:
From pillar to post
During the period following initial referral many carers and sufferers
found themselves to be ‘passed from pillar to post’, between and
within psychiatry and neurology. Thirty-eight different pathways of care were
identified. Most sufferers had been referred to at least two different
consultants and a significant minority had been referred to as many as five
different consultants. Very few people were referred directly to the early
onset dementia team.
A summary of referral pathways is shown in Table 2. The true picture is much more complex, for example, of the six patients (underlined in Table 2) who were referred onto a second general psychiatrist (general psychiatry B) after initially seeing a general psychiatrist and then a neurologist, four were referred onto and remained patients of the early onset dementia service and two were referred back to the first general psychiatrist (not shown).
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Carers complained about being passed from consultant to consultant. They had not received enough information, practical help, support or counselling. The burden of responsibility for finding out about available help was left with the carers and their families.
Service provision
Almost all of the patients (92%; 103/112) were under the care of a
psychiatrist and most were currently with the consultant with a special
interest in early onset dementia (78%; 87/112).
Nearly 40% (45/112) of patients had been referred to day care and almost all had been referred to the Alzheimer's Society's day centre for people with early onset dementia. There was evidence that those attending the day centre tended to present with relatively less severe behavioural problems and required relatively less help with activities of daily living than non-attenders who lived at home. Carers who returned the postal questionnaire (response rate 64%; 61/95) indicated that the attenders were less likely to suffer incontinence or display sexual disinhibition, or to be violent regularly or to need help eating meals than non-attenders with early onset dementia who were, also, living at home.
Carers frequently mentioned that their greatest need was a break from caring, and their highest service priority was appropriate respite care. Residential respite care had been provided for 14% of sufferers in a variety of settings - hospital wards for the elderly, general adult psychiatry wards and private sector residential and nursing homes. While such residential respite care was appreciated, there were criticisms of the care being located in inappropriate environments for younger people with dementia. Carers also commented on the difficulties they experienced in finding appropriate homes for permanent care.
Caring and coping with early onset dementia
Patients who were able to take part in the study described their distress
at losing their abilities to read, write, converse and take part in everyday
life. Just over two-thirds of carers regarded themselves as full-time carers;
half were male. A range of behavioural and social problems were reported to be
of concern to carers. Two-thirds of carers reported that their emotional
well-being was poor or very poor. The longer the length of caring, the worse
their emotional well-being. When carers responding to the questionnaire were
divided into those that had been caring for less than 3 years (n=16),
between 3 and 5 years (n=18) and greater than 5 years
(n=15), there was a statistically significant difference between the
groups in emotional well-being (analysis of variance, f=6,
P<0.01). Post hoc tests (Tukey-HSD) revealed that this
difference was accounted for by the fact that the group of carers who had been
caring for less than 3 years expressed better emotional well-being than the
other two groups.
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Discussion |
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TopAbstractIntroductionThe studyFindingsDiscussionReferences |
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Table 3 shows the prevalence rates found by Harvey. It should be noted that Harvey included people with learning disabilities within the ‘other’ category and the Leeds figures have been adjusted accordingly for this table.
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The numbers (121) found in the Leeds study, aged 45-64 years, were lower than the 152 expected based on Harvey's work, but between the 95% CI (Table 3). The number of people with Alzheimer's disease (41) was at the lower end of the estimates based on Harvey's work, but the rate of 26.5 per 100 000 found in Leeds fell within the Harvey rate of 25-47 per 100 000. Reasons for this lower rate of case identification may include the early onset dementia team being only relatively recently established, coupled with a lack of dedicated continuing care residential services within Leeds, as well as the methodology adopted. The proportion of those found with Alzheimer's disease was 34% (41/121), matching the Harvey estimate of 26% (54/152) or when those with a learning disability are excluded, the proportion with Alzheimer's disease in the 45-64 year age group was 40% in both studies.
The Leeds study identified 20 people with learning disabilities and dementia; much higher than Harvey's work. Reasons for this difference include the presence of a mental handicap hospital in Leeds plus a perceived low level of identification by Harvey (1998). In addition, the Leeds study, unlike the work of Harvey, was not built around a clinical assessment. Therefore, some of those in the ‘other’ category with a diagnosis of dementia unspecified - are likely to have Lewy body dementia, fronto-temporal dementia, or another specific cause of dementia.
Other epidemiological findings are supported by research elsewhere, namely that about 50% of sufferers were aged between 60 and 64 years, that females with Alzheimer's disease outnumbered males by 2:1 and that there was an uneven geographical distribution of cases (McGonigal et al, 1993; Whalley et al, 1995; Fuhrmann, 1997).
The incidence rate of 23-29 new cases per year is comparable to previous findings, which found an incidence rate of 3.4-7.2 per 100 000 for Alzheimer's dementia (Newens et al, 1993).
Referral and diagnosis
Once people contacted their GPs they were referred quickly to a consultant
psychiatrist or neurologist. This study found, like others undertaken, that
there were four main gateways to care
(Alzheimer's Disease Society,
1996; Fuhrmann,
1997). The establishment and further development of a specialist
early onset dementia service offers the opportunity to provide a single
gateway through which sufferers and carers can access information, advice,
expertise and appropriate care. A multidisciplinary diagnostic service can
reduce the length of time from first referral to diagnosis and aftercare.
From pillar to post
In most parts of the country the route to specialist services for younger
people with dementia is uncoordinated, with no clear delineation of clinical
responsibility and recent research in Brighton found 11 different referral
pathways (Fuhrmann, 1997). Does
the ‘pillar to post’ phenomenon result because of the difficulties
in diagnosing or managing these patients, lack of adequate resources or the
unwillingness of generalists to take responsibility for this group of
people?
Service provision
High levels of satisfaction were expressed by carers in relation to the
services provided by the Alzheimer's Society and the specialist early onset
dementia team. Carers valued day care very highly, as elsewhere
(Alzheimer's Disease Society,
1996). However, as in other studies, carers reported difficulties
in accessing appropriate respite, acute and longer-term care for their
loved-ones. The provision of dedicated respite care services and designated
NHS beds could provide appropriate levels of service for some younger people
with dementia and their families.
There is now a lot of practical experience and an adequate evidence base that demonstrates the need for specialist service provision for younger people with dementia. This can then streamline the diagnostic process, build up expertise, clarify clinical responsibility, provide continuity of care and coordinate the delivery of services with other agencies.
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References |
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TopAbstractIntroductionThe studyFindingsDiscussionReferences |
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BARBER, R. (1997) A survey of services for younger people with dementia. International Journal of Geriatric Psychiatry, 10, 809 .
FUHRMANN, R. (1997) Early Onset Dementia in Brighton, Hove and Lewes Area: Prevalence and Service Needs. Brighton: ADS.
HARVEY, R. (1998) Young Onset Dementia: Epidemiology, Clinical Symptoms, Family Burden, Support and Outcome. London: Imperial College School of Medicine.
McGONIGAL, G., THOMAS, B., McQUADE, C., et al (1993) Epidemiology of Alzheimer's pre-senile dementia in Scotland. 1974-1988. BMJ, 306, 680 -683.
NEWENS, A., FORSTER, D., KAY, D., et al (1993) Clinically diagnosed pre senile dementia of the Alzheimer type in the northern health region: ascertainment, prevalence, incidence and survival. Psychological Medicine, 23, 631 -644.[Medline]
NHS HEALTH ADVISORY SERVICE (1997) Heading for Better Care: Commissioning and Providing Mental Health Services for People with Huntington's Disease, Acquired Brain Injury, and Early Onset Dementia. London: HMSO.
WHALLEY, L. J., THOMAS, B. M., McGONIGAL, G., et al
(1995) The epidemiology of presenile Alzheimer's disease in
Scotland (1974-88). British Journal of Psychiatry,
167,
728
-731.
WILLIAMS, D. R. (1995) Services for younger sufferers
of Alzheimer's disease. British Journal of Psychiatry,
166,
699
-700.
WORLD HEALTH ORGANIZATION (1992) The ICD-10 Classification of Mental and Behavioural Disorders. Geneva: WHO.
This article has been cited by other articles:
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  S. Kaiser and P. K. Panegyres The Psychosocial Impact of Young Onset Dementia on Spouses American Journal of Alzheimer's Disease and Other Dementias, January 1, 2007; 21(6): 398 - 402. [Abstract] [PDF]
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| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
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