The Health of People with Intellectual Disability

This special issue for the International Journal of Family Medicine is a first and warmly welcomed by those of us who work and research in the area. 
 
In “Prevalence of depression and dementia among adults with intellectual disabilities in Manitoba, Canada,” Dr. S. Shooshtari and her coauthors have offered us a clear picture of both depression and dementia across the ages. Through data linkage across one Canadian province, Manitoba, the researchers examined specific data over five years about 6048 persons with developmental disability and then made comparisons with those of matched non-developmental disability. Younger adults with developmental disability were found to have a four-times higher risk of dementia than those without disability, and, in the older age group, the risk rises to more than five times. The pattern was similar for depression. Whilst the researchers acknowledge differences in diagnostic codes, they have provided us with a population-level picture of mental health conditions for people with developmental disability and a guide for future policy. 
 
In “Health and functional status of adults with intellectual disability referred to the specialist health care setting: a five-year experience,” Dr. L. Lee and her coauthors examined the profile of 162 adults with intellectual disability who used a specialist outpatient clinic (Concord Hospital, Sydney) over five years. This extensive study found a great range of complexity of health needs, such as high prevalence of neurological dysfunction including epilepsy matched by low levels of physical activity, challenging behavior, and use of psychotropic medications. Older people with intellectual disability had higher rates of hospital stays with mental health issues and epilepsy management being the most common cause of hospitalizations. This paper provides the reader with a longitudinal examination of the complexity of health needs and healthcare servicing for people with intellectual disability. 
 
In “The prevalence of depression among family caregivers of children with intellectual disability in a rural setting in Kenya,” Dr. M. Njeri Mbugua and her coauthors report on their study of caregivers of children with intellectual disability and they found that nearly 80% of caregivers are at risk of clinical depression. Using the Beck Inventory and indicators of socioeconomic status, the researchers, supported by the Catholic Church, collected data from 114 caregivers in one parish in Kiambu (Kenya). Unemployment, low income, and family breakdown were indicators for higher risk, as were social isolation and stigma. 
 
In “Parental perceptions of a Manchester Service for autistic spectrum disorders,” Dr. M. Mockett and her coauthors present their findings from a survey of parents of children on the autism spectrum about their impressions of the multiagency Social Communication Assessment and Intervention Teams. Whilst most parents were happy with this assessment service, they placed emphasis on trust in their relationships with their children's health professionals. Communication between the teams, the parents and family, and the health professional was seen to be crucial. 
 
In “Parental concerns about the health of adolescents with intellectual disability: a brief report,” Dr. M. Tucker and her coauthors have offered a brief insight into the health concerns that parents have for their adolescent child's future. The emerging themes from the qualitative arm of a cross-sectional descriptive study included concerns over dependency, general health, challenging behaviours, and increasing support needs. 
 
This first special issue on the health of people with intellectual disability reflects the breadth of research in the area and points policymakers to pitfalls in health service delivery. 
 
 
Nicholas Lennox 
 
Henny Lantman 
 
Robert Davis 
 
Seeta Durvasula 
 
Jacqueline Small 
 
Margaret Kyrkou

This special issue for the International Journal of Family Medicine is a first and warmly welcomed by those of us who work and research in the area.
In "Prevalence of depression and dementia among adults with intellectual disabilities in Manitoba, Canada," Dr. S. Shooshtari and her coauthors have offered us a clear picture of both depression and dementia across the ages.Through data linkage across one Canadian province, Manitoba, the researchers examined specific data over five years about 6048 persons with developmental disability and then made comparisons with those of matched non-developmental disability.Younger adults with developmental disability were found to have a four-times higher risk of dementia than those without disability, and, in the older age group, the risk rises to more than five times.The pattern was similar for depression.Whilst the researchers acknowledge differences in diagnostic codes, they have provided us with a population-level picture of mental health conditions for people with developmental disability and a guide for future policy.
In "Health and functional status of adults with intellectual disability referred to the specialist health care setting: a fiveyear experience," Dr. L. Lee and her coauthors examined the profile of 162 adults with intellectual disability who used a specialist outpatient clinic (Concord Hospital, Sydney) over five years.This extensive study found a great range of complexity of health needs, such as high prevalence of neurological dysfunction including epilepsy matched by low levels of physical activity, challenging behavior, and use of psychotropic medications.Older people with intellectual disability had higher rates of hospital stays with mental health issues and epilepsy management being the most common cause of hospitalizations.This paper provides the reader with a longitudinal examination of the complexity of health needs and healthcare servicing for people with intellectual disability.
In "The prevalence of depression among family caregivers of children with intellectual disability in a rural setting in Kenya," Dr. M. Njeri Mbugua and her coauthors report on their study of caregivers of children with intellectual disability and they found that nearly 80% of caregivers are at risk of clinical depression.Using the Beck Inventory and indicators of socioeconomic status, the researchers, supported by the Catholic Church, collected data from 114 caregivers in one parish in Kiambu (Kenya).Unemployment, low income, and family breakdown were indicators for higher risk, as were social isolation and stigma.
In "Parental perceptions of a Manchester Service for autistic spectrum disorders," Dr. M. Mockett and her coauthors International Journal of Family Medicine present their findings from a survey of parents of children on the autism spectrum about their impressions of the multiagency Social Communication Assessment and Intervention Teams.Whilst most parents were happy with this assessment service, they placed emphasis on trust in their relationships with their children's health professionals.Communication between the teams, the parents and family, and the health professional was seen to be crucial.
In "Parental concerns about the health of adolescents with intellectual disability: a brief report," Dr. M. Tucker and her coauthors have offered a brief insight into the health concerns that parents have for their adolescent child's future.The emerging themes from the qualitative arm of a cross-sectional descriptive study included concerns over dependency, general health, challenging behaviours, and increasing support needs.
This first special issue on the health of people with intellectual disability reflects the breadth of research in the area and points policymakers to pitfalls in health service delivery.

Background
Consistent with estimates throughout developed countries, the Australian Survey of Disability, Ageing and Carers estimates that ∼3% of the population has an intellectual disability, and for one third of that group that disability arose in childhood.Of this group who identify in the survey as having intellectual disability (or mental retardation) as a main disabling condition, ∼50% are over the age of 15 years (i.e., 0.4% of the Australian population), and this ratio is increasing [1][2][3].As a result of the increased longevity of people with persisting neurological disabilities [4], more interest is being taken in the health care needs of adults with Intellectual Disability.Specifically, the health policies of government agencies now encourage annual comprehensive health checks by general practitioners [5] and referral of adults with complex, or multiple, impairments associated with their Intellectual Disability, to specialist medical officers for consultations.
In 2006, with the express purpose of reducing some of the known barriers to good specialist health care, a specific outpatient clinic for adults with Intellectual Disability was established within the Department of Rehabilitation Medicine at Concord Hospital in Sydney, Australia.This paper reflects on the outcomes from this clinic firstly because of its novel status amongst adult rehabilitation medicine programs and secondly for the value of its data in planning for service development for this special population.
The consultant in rehabilitation medicine in Australia is a specialist physician with training in the assessment and management of the medical and functional status of people with disabilities [6].The assessment includes history taking and International Journal of Family Medicine physical examination with respect to cognition, neuromotor activity, bladder function, bowel function, musculoskeletal function, organ illnesses, and behavior.The model of a multidisciplinary clinic with case conferencing is common in the rehabilitation medicine setting, for low incidence complex conditions.It provides the convenience for patients and carers to have access to a number of disciplines at one visit in comparison with attendance at multiple specialist appointments without coordination.It also allows for the convenience of discussion of benefits and disadvantages of management strategies within a multidisciplinary team at one time, in order to reach consensus on treatment recommendations.
In this Developmental Disability Clinic model, the patients are referred by their primary care General Practitioners to specialist rehabilitation physicians and psychiatrists who conduct their own initial assessments, and then present the cases to a multidisciplinary conference team expanded to include a neurologist, geriatrician, and designated allied health professionals.These weekly case conferences are considered the keystone of the program, offering the regular opportunity for discussion and referral for further management.These case conferences may also be attended by the relevant carers and family members, and referring General Practitioners are invited to participate by teleconference.Allied health professionals (psychologists, speech pathologists, occupational therapists, physiotherapists, dietitians, social workers, and registered nurses) from the Concord Hospital Rehabilitation Services (or the local Disability services for out-of-area patients) attend the case conferences and provide episodic clinical care when required.

Aim
The aim of this observational study was to report on the demographic characteristics, functional disabilities, and complexity of illnesses of adults with Intellectual Disability who were referred by primary care clinicians in an identified region, to medical specialists in the outpatient hospital setting in Australia.

Methodology
The research is a descriptive study based on an audit of information from a database setup in early 2006 with the approval of the Concord Hospital/Sydney University Research Ethics Committee.This Developmental Disability Database accommodates de-identified information on all attendees of the Developmental Disability Rehabilitation Clinics at Concord Hospital, and on other adult in-and out-patients with Intellectual Disability seen individually by the consultants who participate in this Clinic, at other sites throughout Sydney (rehabilitation physicians, psychiatrists, neurologists, geriatricians, and some paediatricians).
The data have been entered from the medical information recorded at the time of initial history taking and assessment.Outcomes of investigations and treatments are entered as they are retrieved during the episode of care.The database currently contains information on over 1400 adults with Intellectual Disability seen between 2006 and 2011.
3.1.Subjects.Subjects were included in this study if they had a diagnosis of Intellectual Disability and were aged 16+ years.So that the study subjects were representative of people who might be referred to this kind of clinic, subjects were only included if they lived within the four Local Government Areas (LGAs) regarded as those served by Concord Hospital (total population 180,000 in 2008).
The suburbs that make up these 4 LGAs are the catchment for the Aged Care Assessment Team that operates from the Department of Geriatric Medicine of the hospital.These Local Government Areas also constitute an administrative subset of the Central Sydney Division of General Practice and a subset of the government Disability Services.

Data.
Data from the electronic database were extracted as spreadsheet files that could be analysed directly for descriptive statistics or exported into SPSS Version 18 for more detailed analysis.Data concerning hospitalisations and follow-up clinician assessments were obtained from both the database records and hospital medical records systems.

3.3.
Measures.Data were collected on age at initial assessment, known clinician determined cause for intellectual disability, living environment, functional dependence, level of intellectual disability, medications, epilepsy characteristics, neurological disabilities, other organ disorders, lifestyle behaviours, and mental status.Subjects had their weight and height measured to determine body mass index.Note was made of challenging behaviours such as impulsive or compulsive behaviours if these activities were leading to self-injury or otherwise causing stress to carers.Carer observation on general behaviour over the previous year was recorded as "unchanged", "fluctuating", "deteriorating" or "much worse".Completion of the Adaptive Behaviour in Dementia Questionnaire (ABDQ) by attending carers was also utilised occasionally by assessing clinicians to establish progress of deterioration [7].
Information was collected on reasons for hospital admissions, details of medical interventions (such as botulinum toxin injections), and the involvement of clinicians in the twelve months prior to initial assessment.
Data were also sought from the Disability Pension database [8] and the NSW Disability Services database [9] for pension and service recipient numbers of people living in the study region who identified as having Intellectual Disability.These data were used to estimate the proportion of people with Intellectual Disability living within the defined geographical area who were seen in the clinics.Measures used are detailed below.

3.3.1.
Functional Independence Measure.All subjects seen in the clinic have their functional status determined using the Functional Independence Measure (FIM) instrument [10].The FIM is used widely in Rehabilitation Medicine settings in Australia.It is a standardised instrument whose development was initiated by a national taskforce in the USA in 1983 [11,12].The FIM has 18 domains of care and a seven-level scale of support ranging from "7", independent, needing no assistance, through to "1", completely dependent, possibly needing two helpers.
The 13 motor domains incorporate personal care, continence, transfers, and mobility, and there are 5 domains in the cognition group (comprehension, expression, problem solving, social interaction, and memory).A profile of scores across the domains is established for use in goal setting and review of progress.The FIM total score (FIMTOT) has been demonstrated to correlate well with hours of care need in the community [13].

Cause and Level of Intellectual Disability.
Patients were included in the database if the carers nominated, or past files indicated, that they have had low intellectual functioning since childhood and they demonstrate the need for assistance from another person in communication, mobility, or self-care.The cause for Intellectual Disability was taken from existing files or the referring letters.When the physical examination was suggestive of an undiagnosed syndrome, and the families were agreeable, genetics testing was undertaken.
The descriptor of the level of Intellectual Disability has usually been applied in childhood following testing in the school setting and been retained throughout adulthood in documentation.Some people may have had cognitive neuropsychological testing in adulthood at the time of entry to employment services or accommodation support services (to establish eligibility).For many the level was an estimate made by caregivers.The descriptors follow the WHO conventions: "Mild" refers to IQ level approximating 55-69, "Moderate" refers to IQ level approximating 40-54, "Severe" refers to IQ level approximating 25-39, and "Profound" refers to IQ level approximating <25 [14].

Comorbidities.
Histories of past and current illnesses, and physical findings, were obtained from multiple sources including the subjects' General Practitioners, notes recorded in group home files, hospital medical records, or by inference from the medications, for example, hypothyroidism implied by prescription of thyroid hormone and diabetes implied by prescription of hypoglycaemics.
Data were also collected on whether specific management interventions were initiated as a result of the specialist clinic visits, for example, botulinum toxin injections for spasticity, percutaneous endoscopic gastrostomy feeding, behaviour management plans, epilepsy interventions, and psychotropic drug prescription.

Hospitalisations.
Hospitalisations are recorded in the files of patients attending the clinics, and note is made in the database.However, in the search for all adults with Intellectual Disability who had accessed secondary health services in the region, an additional audit was conducted for this study.The regional inpatient statistical collection (ISC) for January 2006 till December 2009, for the four public hospitals in the region, was interrogated for all separations (inpatient admissions) of adults (16+ yrs), living in the four LGAs of interest, with a comorbidity code relating to Intellectual Disability: that is, F70 Mild mental retardation, F71 Moderate mental retardation, F72 Severe mental retardation, F73 Profound mental retardation, F78 Other mental retardation, F79 Unspecified mental retardation, or F84 Pervasive developmental delay (Retts, Aspergers, Autism).This yielded 110 names.The full hospital records of these people were scrutinized to establish the correctness of the code.After excluding people whose medical records indicated a diagnosis of schizophrenia or dementia in any of these identified admissions, and confirming our inclusion criteria for the study, we established that 68 adults with Intellectual Disability had been admitted to hospital for dayonly or overnight care in the period, all of whom were already known to Clinic Team members or have been followed up since that time.

Service Recipients.
In 2009/2010, there were 333 people (aged 16-64 yrs) with Intellectual Disability living in the four Local Government Areas of interest in receipt of the Disability Pension and 295 people with Intellectual Disability in the same age group in receipt of Disability Services, giving an administrative prevalence for adults with Intellectual Disability in this region, of 19/10,000.This regional prevalence is lower than expected when compared with the national survey prevalence of ∼4/10,000 (80,000 15+ yrs of 19.6 M total population in 2003) [3] which would lead to an expectation of 720 adults.

Demographics.
Information was obtained on 162 adults seen between January 2006 and December 2010, who met the criteria for inclusion in this study, that is, 162 out of probable 350 adults in the region (when an estimate for those over 65 yrs is added).Approximately 46% were referred to the specialist Intellectual Disability clinic in this time.The age range was 16-86 years at time of assessment, with a mean age of 44 years.Forty-seven per cent were over 44 years of age.Males (52%) were slightly more prevalent than females (48%).Most lived in group-home-type supported accommodation (88%).Some of the important demographic and clinical details are summarised in Table 1.
Chromosomal abnormalities were identified as a cause for the childhood brain damage in 18%, and 38% had a history of a catastrophic hypoxic perinatal event.Forty-four per cent (44%) had no known cause for their Intellectual Disability.One third had mild Intellectual Disability and two thirds had moderate, severe, or profound Intellectual Disability. Figure 1 demonstrates the variation across the age groups.Almost 90% of the patients in the study group were in receipt of some form of formal support.Intermittent support (drop-in or case management) was provided for 31% who lived alone or with unpaid carers who provided advice and assistance with complex executive functions such as financial planning.Twenty-three per cent (23%) needed the support of another person throughout the day for some activities of daily living.The other 46% of the group consisted of people who were extremely dependent, with FIMTOTs less than 60, i.e., they were receiving nursing-home-type assistance 24 hours per day.The largest group were those people under the age of 45 years needing intensive-pervasive support.Figure 2 demonstrates a pattern across the age groups for dependency, which is similar to that for level of Intellectual Disability, depicted in Figure 1.

Health Status and Function-Assessment and Management.
Table 2 shows the lifestyle risk factors, neurological disabilities, and medical comorbidities identified at initial assessments or diagnosed by the clinicians.There was a high prevalence of neurological dysfunction (epilepsy, spasticity, and behavioural disturbance) but low prevalence of chronic disease or illness.Table 3 summarises the types of interventions that occurred as a result of the subjects being seen in the clinic.For twenty people (12%), the initial assessment and provision of advice to GPs was the only involvement of the Clinic practitioners.For the rest, there was a period of episodic management and followup by the relevant medical specialists, consultant nurses, or allied health professionals.

Lifestyle Factors.
In terms of lifestyle behaviours the group had very low levels of smoking, and no cases of illicit drug use or unsafe sex practices.Thirty per cent of the group were overweight or obese, and 77% were categorized as "inactive" after questions were asked about their levels of daily activity.This level of inactivity dropped to 60% when those with movement disorders were excluded.

Challenging Behaviour.
Eighty people had challenging behaviour, specifically for which they had been referred to the Clinic.Fifty-six people (35%) were described as having some form of impulsive aggressive behaviour or compulsive self-injurious behavior.Twenty-two (13%) had demonstrated fluctuating or deteriorating behaviours in the previous 12 months.Fifteen per cent of the study group were referred, following case conference, for continuing review by the Clinic psychiatrists and/or the local Behaviour Intervention Team psychologists for special plans to assist care workers.
4.3.3.Dementia.The were 22 people described as having "changing" behaviour (i.e., fluctuating or declining over the previous 12 months).Current criteria for the descriptor of "dementia" do not easily incorporate people with Intellectual Disability, and so decisions about dementia were based on the history of cognitive changes with behavioural manifestations.The Adaptive Behaviour in Dementia Questionnaire [6] was used in interviewing carers about the changes in identified behaviours over the previous 12 months."Possible" dementia was diagnosed by the Case Conference Team in 4 people and "probable" dementia in 7. Of those 11, two people had Down Syndrome and one had Fragile X; all had onset of their dementia before the age of 60 years.Carers of people with changing behaviour were offered assistance and advice in dealing with behavioural changes, and documentation was provided for five people who needed justification for more care hours in their existing accommodation environment or a shift to one in which more care could be provided.

4.3.4.
Spasticity.There were high rates of spasticity in the younger group.Approximately 10% of the group with significant spasticity were seen beyond their initial clinic assessments, by the Clinic rehabilitation physicians for medication management of their dystonia.Five people had botulinum toxin injections for focal spasticity in upper and/or lower limbs.4.3.5.Dysphagia.Forty-five people had dysphagia (difficulty swallowing).The Clinic physicians initiated investigations, referred to speech pathologists, and discussed with gastroenterologists when needed.Advice was offered to carers on the day to day practices which should be initiated in people with swallowing difficulty.Twenty-one people (21) had been in receipt of percutaneous endoscopic gastrostomy (PEG) feeding prior to initial assessment by this clinic.About half of this group had had the PEGs inserted as children.They continued with monitoring by their existing specialist gastroenterologists or were linked with new local practitioners.For a small number, the outcome of the clinic assessment, in relation to dysphagia, was referral to the local Palliative Care teams for ongoing management advice and conjoint care.4.3.6.Sensory Disabilities.Vision disorders (33%) and hearing impairments (12%) were also common neurological disabilities.Where relevant, nursing and allied health professionals in the clinic teams or local disability teams provided assessment and immediate management, and referrals were made to other linked specialist clinicians such as ophthalmologists when necessary.

Epilepsy.
Of the 162 people in the study, 89 had a history of epilepsy and 85 were taking anticonvulsant medications: all but 8 had childhood onset epilepsy.Of the 85 people taking anti-convulsants for epilepsy, 32 had had no seizures since childhood or were well controlled on one or two medications.Fifty three (32% of the study group) continued to experience monthly, weekly, or daily seizures.In accordance with the health policy operational for all residents of supported accommodation, all people taking more than one anticonvulsant were seen at least annually by a specialist neurologist and all had Emergency Epilepsy Management Plans.The study group was seen by one of four neurologists in two practice sites in the region.In two cases in the past two years prolonged admission to Concord Hospital with conjoint care by neurologist and rehabilitation physician was required.
Adult onset epilepsy was a new finding in 8 people of the 11 in whom dementia was eventually diagnosed.

Chronic Illnesses.
Prevalence of hypertension, coronary vessel illness, diabetes, chronic respiratory disorders, and osteoarthritis were low, although as is depicted in Figure 3, the prevalence of diabetes, hypertension, and osteoarthritis did rise with age.(one of which was a Centre for Mental Health).Table 5 summarises the separations (admissions and discharges) by age groups and demonstrates an average occupancy of 60 overnight bed days per year for the whole group in any hospital in the region.When accounting for the numbers in each age group, the incidence of overnight hospitalisation was highest in the older age group.There were four main reasons for admission to hospital for overnight care, described in Table 6: mental health, epilepsy, rehabilitation, and miscellaneous medical disorders.In the calendar year 2009, there were 6 transfers to the Rehabilitation Ward: for recuperation following medical events (2), back pain (2), fractured neck of femur (1) and spasticity management (1).

Discussion
This study extends our current knowledge of the health care needs of adults with Intellectual Disability by reviewing the health status of people referred by primary care practitioners to specialists in the hospital-based health system.The main findings of the study are that in this group the prevalence of significant dependency is high, the prevalence of neurological disability is high, the prevalence of chronic disease is low, although it does rise with age, and multiple specialist medical officers and other clinicians can be organized to provide coordinated care.
Although the study group is small, it does represent about 50% of the known adults living with Intellectual Disability in a region which has a well-organized and resourced health support system.In terms of the disability support system, this region did not have a large institution in devolution in its midst, and so it is not surprising that the prevalence of adults (0.18%) may be lower than the national average of 0.4% [3].

Clinic Model. It is well established that people with
Intellectual Disability may be disadvantaged in promoting their own health because they are unable to take this responsibility themselves, and they are unable to convey their symptoms adequately to their carers.The individual difficulties are compounded by lack of time committed by health professionals to whom they are taken, the lack of responsiveness in the secondary health system that they may experience, and the inability of carers to adequately coordinate the multiplicity of specialists to whom they may need referral [15].
By creating an outpatient clinic service that involves multiple interested specialist clinicians, encouraging both formal and informal carer attendance, and establishing protocols with colleagues in the investigation sectors of the hospital, a multidisciplinary-clinic-with-regular-caseconferencing model can overcome some of these known barriers to provision of high-quality care.Guidelines for hospital-based specialty clinics for people with Intellectual Disability have been suggested [16], and the Concord Hospital clinic in the Department of Rehabilitation Medicine meets all of these criteria for best practice.
In the Australian setting, the prescription of some psychotropic drugs by General Practitioners is not subsidised by the government, and their prescription is restricted even amongst specialists to psychiatrists, neurologists, and rehabilitation physicians.A large proportion of the study group (47%) were taking more than one class of psychotropic medication-a reflection of their complexity and need for specialist consultation.The Clinic setting offers the opportunity for efficient prescription and consensus discussion of the advantages and disadvantages for the patients who may benefit from this group of medications among this group of specialists.This "peer review" time is considered an important monitor of the quality of care provided by the clinic.

Health Status.
The findings of high levels of spasticity, epilepsy, and behavioural disturbance in this group are consistent with other national and international literature on clinic cohorts and accommodation support cohorts of adults with Intellectual Disability [17][18][19][20].The findings of age-related rises in prevalence of hypertension, arthritis, and diabetes mellitus in adults with Intellectual Disability, are also beginning to be highlighted in literature from developed countries [21][22][23][24].
A level of inactivity of 60% in those who could be active (purposefully walking for 30 mins per day) is slightly higher than the figure for the general Australian population [25].In our study, these people form the group who are overweight or obese and are being prescribed psychotropic medications.Clinic staff have been active in the development of special health promotional material for clients and carers, and in the organization of "healthy eating" and "being a healthy person" education programs.
Although the numbers are small, our identification of early onset dementia in this group is consistent with recent studies on ageing in people with Intellectual Disability wherein it has been documented that people with Down Syndrome manifest their Alzheimer's Disease at much younger ages than the general population.Non-Down's patients may develop dementia at the same rate as the general population, or perhaps slightly earlier [26,27].Care and advice for the carers of this group are similar to that for people without Intellectual Disability [28].

Hospitalisations.
About 50% of the study group had presented to an Emergency Department or been admitted to a hospital for overnight care in the past four years and their reasons for admission were numerous.Their average length of stay for overnight care was similar to that of the general population for these aggregated groupings of rehabilitation, mental health, seizure/neurology, and miscellaneous medical.While it could be postulated that people with Intellectual Disability might need a longer stay in hospital for each admission because of diagnostic overshadowing or poor communication, it appears that this is not occurring in the few hospitalizations that have been documented in our region.It could be surmised that the existence of the special clinic and its in-built followup and liaison mechanisms may be assisting in maintaining their lengths of stay at the general population averages.
The low bed day utilization figures per year are significant in that an identified ward for people with Intellectual Disability in a regional hospital would be impractical.It is therefore even more important that organised liaison is provided to ensure that communication at all levels is facilitated and high-quality care provided.

Health Care
Policy.Almost all of the group in the study were residents of supported accommodation, provided either by government or nongovernment organisations.The intense accountability scrutiny under which the staff are put to implement health promoting policies ensures that in general: (i) the residents are living in a healthy environment, (ii) they have protocols in place for the early identification of risk, (iii) their access to interested health practitioners is facilitated.
Although all the referrals to the clinic came from general practitioners (government convention), they were often initiated by care workers in supported accommodation organisations, and many were mandated by the national prescribing rules and state Health Policy.There were low numbers of people with Mild Intellectual Disability in the study group.This is the group considered traditionally to be at greater risk of health care inequalities.It is possible that in our region they continue to be a group with significant problems that are not being addressed.It is possible also that they were being seen regularly by their General Practitioners who did not feel their needs were of a level requiring specialist care, and so they would not be visible in our specialist clinic dataset.Those who were not referred to specialist services appeared to be the younger group, and therefore possibly likely to be less complex.

Conclusions
We believe that our Clinic may be addressing a previously unmet need in our region.This study concludes that (i) the known prevalence of adults with Intellectual Disability in the community is quite low (∼4 in 1,000 in Australia and 19 in 10,000 in our region); (ii) approximately 50% of adults with Intellectual Disability in our community also have associated illnesses and multiple disabilities requiring specialist medical referral; (iii) almost all of that group are very dependent, and living in formal care; (iv) those who need specialist attention need multiple specialists' attention; (v) chronic physical illness is more prevalent in the older subgroup of people referred to secondary services.
As expected, the most common reasons for referral to specialist health services for advice and treatment are related to the neurological damage or delay experienced in childhood, that is, challenging behaviour, spasticity, dysphagia and epilepsy.
System wide planning for increasing access of adults with Intellectual Disability to interested specialist clinicians should focus on continuing education and skill development in consultant physicians, nurses, and allied health professionals who have identified expertise in the management of epilepsy, movement disorders, neurological disability, challenging behavior, and ageing.This training and skill development may be facilitated in the setting of a multidisciplinary outpatient clinic at a regional level.

Disclosure
This paper has not been published except in conference abstract form nor submitted for publication elsewhere.

Introduction
There is an increased demand on the care givers of children with developmental disability [1] especially when it is intellectual in nature.Intellectual disability is associated with poor communication, academic and social skills that make the child more dependent on the caregiver than the normal child.
In the past (in Kenya), the extended family would be available to provide care to an intellectually disabled child easing the burden of care expected from the nuclear family.However, in recent times, there is a shift from extended family to nuclear family.In addition, over the past 2 decades, family units have become smaller [2] and the rate of marriage break down has increased [3].Though the magnitude of the responsibility depends on the level of intellectual disability, it is greater for those in small nuclear families.
It is also important to note that the economic situation in Kenya dictates that people work long hours with little pay especially if they are in nonskilled employment.This coupled with the fact that there are few institutions or organizations that school or take care of the intellectually disabled makes the role of caregivers enormous.The caregivers are usually the mother of the child, elderly family members, or the unemployed members of the family.Such people do not normally plan to be caregivers [4] but find the need unavoidable.In addition, the caregivers do not receive preparation for this role, and, in the process of engaging in the same, they later on find it very demanding [4].Unlike other carers, the caregiver may be deprived of privileges, rights, and respect that go with other careers [3].Further, there is lack of career progression, and the individual may continue to work involuntarily [3].In the majority of cases in Kenya, the caregiver receives no financial assistance due to the poor socioeconomic status of the people.The caregiver may experience lack of control of what happens in their lives.A sense of mastery is associated with good physical and psychological health of an individual [5][6][7].This may be absent in some of the caregivers.The relationship between caregiving and health is described generally in terms of stress.Stressors in the context of caregiving are the difficult circumstances and problems.Such demands and obstacles exceed or push to the limit the caregivers' capacity to adapt [2].

Materials and Method
The cross-sectional descriptive study was conducted in Gachie Parish in Kiambu (Kenya) between September and November 2007.Gachie Parish is located 15 Km north of Nairobi and consists of eight churches with a population of 10,000 followers.The location has both local residents who do peasant farming as well as tenants who work in Nairobi city.It is a cosmopolitan location with people of both low and high socioeconomic status.Parish has a database of all the children in Parish who have intellectual disabilities.This data was collected in early 2007 by the Parish leaders in an attempt to offer assistance to the needy cases.All the caregivers of 150 registered intellectually disabled persons were requested to participate in the study.One hundred and fourteen fulfilled the inclusion criteria which included caregiver age between 18 and 70 years, informed consent, and diagnosis of intellectual disability having been done before the child attained the age of 18 years.Thirty-six persons in the database did not participate in the study because they did not fulfill the inclusion criteria.
The participants were assured of confidentially.Participation was voluntary, and other ethical considerations were fulfilled.Ethical approval was obtained from Kenyatta National Hospital, University of Nairobi Ethical and Research committee, and permission to perform the study was obtained from the Department of Psychiatry, University of Nairobi.
The enrolled participants were subjected to a sociodemographic questionnaire to collect data on the age, sex, marital status, religion, education status, and occupation.The Beck Depression inventory was administered to collect data on the risk of depression.The Kiswahili version (provided by the 3rd author) of the Beck Inventory was administered by the 1st author who was trained by the second author.Kiswahili is the national language in Kenya and is well understood by the majority of Kenyans.This is an inventory with twentyone multiple-choice self-report inventory questionnaire and is one of the most widely used instruments for measuring risk of depression.The questionnaire is designed for adults aged 17-80 years.
The Father in charge received an advanced written explanation highlighting what the study was all about.He thereafter made an announcement in the church, and the caregivers gathered at the parish hall at the given date.After introduction, the principal investigator explained the details about the study, the benefits and the risks, and the fact that it was a voluntary exercise.Those that consented after the explanation signed a consent form, while those unwilling to participate were allowed to leave.The consenting participants completed sociodemographic questionnaires and a Kiswahili version of the Beck Inventory.Those that needed assistant to complete the questionnaires were helped by the principal investigator and research assistants.No data related to the severity of the intellectual disability of the persons who were under the care of the caregiver was collected since this was not within the scope of the current study.

Data Analysis
The data collected was entered in an Excel spreadsheet, cleaned, and analyzed using the statistics package for social sciences (SPSS) version 12. " means the significant is the same as the first one in each particular column.
Multivariate regression analysis was done, and the results were presented in tables.

Results
All the caregivers were Kenyans of African origin, and the children under their care were aged between one and eighteen years of age.
Majority of caregivers were aged between 21 years and 45 years of age.All the caregivers were Christians with 89.5% being female.
Majority of caregivers were married, unemployed, and had primary school education (this is the first eight years of school while secondary education is the 9th-12th year of education).Results are shown in Table 1.
The majority of caregivers (79%) were at risk of having clinical depression as per result table showing percentages of likely severe, moderate, and mild depression.Results are shown in Table 2.
Sociodemographic factors that were associated with the risk of depression included gender, unemployment, primary education, married status, and the age of caregiver.The results are shown in Table 3.

Discussion
In the current study, 79% of the caregivers were at risk of clinical depression as derived from Beck Inventory score.This finding is consistent with that of Turner and Sanders [31].All the caregivers had not previously been diagnosed by a clinician for depression.Those found with the risk of clinical depression were referred to Kenyatta National Hospital for further clinical evaluation and treatment.Various factors may contribute to vulnerability of the caregiver to depression, and of importance is financial lack as the caregiver is unable to engage in income generating activity.In addition, social isolation, loss of previously close friendships, and stigma associated with taking care of intellectually disabled person may further predispose the caregiver to the risk of depression.
The sociodemographic characteristic of the caregiver shows that there was a statistically significant association between unemployment and risk of depression.Unemployed caregivers have little or no income.Further, the burden related to financial costs is aggravated by insufficient public resources in place at the community level, such as lack of schools for the intellectually disabled and proper health facilities to meet their health needs.In Kenya, special schools or classes and special teachers for the intellectually disabled persons are few and apart with some regions having none.
The married caregivers had statistically significant higher levels of risk of depression than the singles, divorced, or separated because in the African culture, intellectual disability is associated with stigma and, hence, the risk of higher levels of depression among the married.Nearly half (44.7%) of the depressed caregivers were married.This may be due to lack of emotional support from the spouse.The divorced/separated and single may on the other hand have adapted coping strategies to deal with the situation.Frey et al. [32] had similar findings in their study.
The finding that gender was significantly associated with risk of depression is in keeping with findings of other studies [33].The women are responsible for the emotional care of the children.In the African context, it is more acceptable for the woman to take up the role of the caregiver.This may result in low self-esteem and loss of self that may be International Journal of Family Medicine associated with maternal depression due to subjective caregiving burden among them [33].
All the participants were Christians which reflects religious background of the study area.

Limitations of the Study
(1) Preexisting depression was not assessed and may have had an influence on the findings.
(2) This study was researched in a single locality and, hence, it would be difficult to ascertain if the risk of depression of the caregivers would be the same or different from other localities vis-à-vis urban and rural settings.

Conclusion
Beck Inventory scores indicated that majority of caregivers of children with intellectual disability had scores indicating risk of mild, moderate, and severe depression.The current study shows that caregivers of persons with intellectual disability are likely to be at risk of depression.There is therefore need to avail a support system to prevent or reduce the risk of depression in the caregivers of intellectually disabled children.

Introduction
Persons with developmental disabilities (DDs) are those who "have significantly greater difficulty than most people with intellectual and adaptive functioning and have had such difficulties from a very early age.Adaptive functioning means carrying out everyday activities such as communicating and interacting with others, managing money, doing household activities and attending to personal care" [1].DD is often used by researchers as a broad term to include a range of neurological diagnoses.In this paper, we report the estimated prevalence of dementia and depression for adults with DDs, intellectual disability (ID), and autism spectrum disorders (ASDs).
The most recent Canadian study [16], also based on hospitalization records, but nationally, used data administered by the Canadian Institute of Health Information (CIHI).This study concluded that, overall, 41.5% of all Canadian hospitalizations among persons with DD occurred for psychiatric reasons.Although Canada has an estimated 120,000+ individuals aged 15 or older living with DDs [26], no population-level information exists on the prevalence and epidemiology of mental illnesses among this population living in the community or on their mental health needs.
People living with a dual diagnosis of DD and mental illness have complex health and social needs, therefore requiring ongoing support for health, housing, education, and employment.Late diagnosis and inadequate support could result in significant economic cost and further complications both for these individuals and for their families and caregivers [27].We need accurate estimations of the prevalence of mental illnesses in this population, along with other demographics and health-related information, to better identify their medical and social support service needs.To address this lack, we conducted the present study using linked data from several provincial administrative databases in Manitoba to (1) estimate the prevalence of two types of mental illnesses, dementia and depression, among younger  and older (55+) adults with DD; (2) compare the age-specific prevalence estimates between persons with DD and a matched comparison group without DD.We focused on dementia and depression because prior research yielded high, but inconsistent, prevalence estimates.Moreover, research indicates that these two illnesses are a growing source of functional decline, morbidity, and poor quality of life (e.g., [2,27]).
Dementia is a mental disorder characterized by a loss of intellectual abilities of sufficient severity to interfere with social or occupational performance [28].Although some studies have examined the risk of dementia among people with DD, only a few were population-based studies.Most of these studies-conducted in the USA, UK, Ireland, and Australia-focused on the prevalence of dementia only among subjects with ID.These studies produced inconsistent results.For example, a state-wide survey in New York State found an overall prevalence of 3.1% among individuals with ID aged 40 and older.The prevalence among persons with ID aged 60 and over was estimated at 6.1% [29].In Ireland [30], Tyrrell and colleagues (2001), using DSM-IV criteria for dementia, estimated age-specific prevalence at 1.4% for those aged 40 and under, 5.7% for those aged 40 to 49, and 30.4% for those aged 50 to 59.A recently published report on dementia in older adults with ID [31] highlights the considerable variation found amongst studies in terms of dementia prevalence.
Depression, another mental health disorder shown to affect persons with DD at a higher rate than the general population, is a common disorder that presents with depressed mood, loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite, low energy, and poor concentration [32].National data from the Canadian Community Health Survey: Mental Health and Well-Being (CCHS 1.2) estimates the lifetime prevalence of major depressive episodes among Canadians aged 15+ at 12.2% [95% CI, 11.7-12.7%][33].Using health administrative data, one report estimated the five-year treatment prevalence of depression for the population of Manitoba, Canada, at 18.2% (18.09-18.29).It reported that the highest prevalence of depression among residents of Manitoba over a five-year time period occurred in adults aged 35 to 54 [34].
Although reports of depression prevalence exist for persons with DD, they provide fairly inconsistent results.Moreover, most prior studies focus on the risk of depression among persons with ID only.For example, a study by Deb and colleagues in South Wales, UK (2001) screened a group of 90 randomly selected adults with ID aged 16 to 64 for various psychiatric illnesses, using the Mini Psychiatric Assessment Schedule for Adults with Developmental Disability (Mini PAS-ADD) and using criteria from the International Classification of Diseases-10th revision (ICD-10).Using both criteria, the study estimated the prevalence of depressive disorder at 2.2% [9].More recently, Bhaumik and colleagues investigated the psychiatric diagnoses of 2711 adults with ID aged 19 and older in Leicestershire and Rutland, UK [14].All diagnoses were recorded based on clinical assessments using ICD-10 criteria.The study estimated the overall prevalence of depressive syndrome at 4.3%.In contrast to these results, Marston et al. (1997) used a standard checklist comprising 30 symptoms from ICD-10 diagnostic criteria and the Disability Assessment Schedule [8].The checklist was completed with the clients and caregivers for 82 persons with ID aged 15 to 58 in the West Midlands, England.Marston estimated the prevalence of depressive syndrome at 43.9%.As the reviewed literature makes evident, the majority of prior studies focused on the risk of depression only among persons with ID and reported variable estimates.The substantial variations in reported rates could be due to several factors, including the specific type of ID studied, study population characteristics (e.g., age and sex), depression criteria, and methods of measurement.
Given the existing inconsistencies in the reported estimates and the lack of population-based information on the prevalence of depression and dementia among persons with DD in Manitoba, we conducted the present study using population-based linked administrative data from several sources to (1) estimate the prevalence of depression and dementia among younger (20 to 54) and older (55+) adults with DD living in Manitoba and (2) compare their estimated rates to those of a matched comparison group without DD.

Region and Population.
Manitoba has a population of 1.17 million, making it the 5th largest of Canada's provinces and territories.Children under the age of 15 make up 19.6% of Manitoba's population, whereas seniors aged 65 and over represent 14.1% [35].Manitoba has a relatively large aboriginal population (12.7%), which has a much higher reported rate of disability (e.g., [36]).The target population of our study comprised Manitoba residents of all ages.We used the December 31, 2000, population count from the Manitoba population Registry for prevalence estimation.

Data Sources.
This study analyzed five fiscal years of data (from April 1, 2000, to March 31, 2005) from multiple administrative databases contained in the Manitoba Population Health Research Data Repository (hereafter, the Repository).The Manitoba Centre for Health Policy (MCHP) of the University of Manitoba maintains the Repository, which contains a comprehensive collection of anonymized but linkable health and nonhealth administrative databases covering all Manitoba residents.Researchers have used the Repository extensively for population-based research and the quality of the Repository's data has been evaluated as high based on the completeness of the data sets and the accuracy of the information recorded [37][38][39][40][41].The following section briefly describes the administrative data sets used in the present study.

Population-Based Registry.
The registry contains demographic information, such as age, sex, and location of residence, for all Manitoba residents (including those living in First Nations communities) registered with the provincial department of health, Manitoba Health (MH), to receive publicly funded universal health care.Thus, it provides an accurate number of the population of Manitoba to serve as the denominator for the calculation of age-specific rates.We used information on age, sex, and place of residence for matching purposes.

Administrative Health Databases.
The provincial government originally developed the administrative health databases in 1970 to administer the universal medical insurance plan.The Repository at MCHP contains anonymized records of these databases for virtually all contacts with the provincial health care system, including physicians, hospitals, personal care (nursing) homes, and home care, as well as pharmaceutical prescriptions.All individuals registered in the provincial health care program are assigned a ninedigit Personal Health Identification Number (PHIN).MCHP uses an encrypted, scrambled version of the PHIN as the consistent nonidentifying research number, which permits researchers to link data across data files and track individuals over time while ensuring confidentiality.This study used data from three health administrative databases.First, we used the Hospital Abstracts database, which contains information taken from medical charts created when patients are discharged from hospital.It includes demographic as well as clinical information relating to inpatient and outpatient services received [42].The clinical information in the database, which uses the ICD-9-CM (the International Classification of Diseases-9th Revision-Clinical Modification), codes up to 16 diagnoses and 12 surgical procedures [43].As of April 1, 2004, the ICD-10-CA and CCI, the 10th revision of the ICD coding system, codes up to 25 diagnoses and 20 procedures.This study searched all hospital discharge codes when looking for a diagnosis.
Second, we used the Physician Claims database, which contains information from records of patient contacts with physicians.This database has the primary purpose of financially reimbursing health care providers for services provided.The clinical information on physician claims includes only one diagnosis coded using ICD-9-CM [43].Third, we used the drug database, which contains prescription drug claims from the Drug Programs Information Network (DPIN), an online point-of-sale prescription drug database for all community-based pharmaceuticals dispensed to Manitoba residents since 1994.

Study Period.
We based all analyses presented in this paper on five fiscal years of data: from April 1, 2000, to March 31, 2005.

Study Population.
The total number of individuals of all ages who met at least one of our DD criteria was 7,362.Of these, 7,135 persons had at least 365 days of coverage.Of these, we excluded those residing in personal care homes (PCHs), that is, a nursing home, or having a Public Trustee postal code.We made this decision for several reasons.First, we suspected that cases with DDs in PCHs and those listed with a Public Trustee postal code would have higher rates of comorbidities, including mental illnesses, making their health profiles quite different from those living independently in their communities.Second, compared to the general population, those in PCHs or in other residential facilities have a different level of access to health and social services; therefore, including them might introduce some bias to our results.Third, we excluded such cases because, in some cases, it was difficult to match them according to their place of residence.We also excluded ten people from the study group because they had no assigned Income Quintiles (IQ) (An income quintile divides the population into five income groups (from lowest to highest income) with (approximately) 20% of the population in each group.We derived the income quintiles with data from the public-use census file 2001 developed by Statistics Canada.We linked the census file to the Manitoba population from the Manitoba Population Registry via the corresponding postal code conversion files) information attached to them in the database.This left us with a total of 6,054 individuals who lived for at least one full year between 2000 and 2005 in the community and who met our DD criteria.Of these 6,054, we matched a total of 6,027 by sex, age (year of birth), and three-digit postal code, using a ratio of 1 : 2. We matched for age, since persons with DDs are found to be a much younger population than the non-DD population.In addition, research has shown that the prevalence of some mental illness conditions-for example, dementiaincreases with age [2].We matched for sex, as research shows that a higher proportion of persons with DD are males than females [44].In addition, the conditions of interest, depression and dementia, are more commonly found among females [34,45].We also matched the two study groups based on place of residence, since research shows that this affects individuals' access to health services (e.g., [46,47]).
We matched a total of 27 people on the basis of the same characteristics, but using a ratio of 1 : 1.We could not match the remaining six individuals, so we excluded them from the analysis.Thus, our DD population comprised a total of 6,048 persons with DD living in the community.We based the analyses presented in this paper on data for those aged 20+ with DD (n = 1, 619) and their matched comparison group (n = 3, 231).

Prevalence of Depression.
We determined a history of depression via the ICD diagnostic codes from the medical records, as well as the prescribed medication database, using the following criteria: (III) at least one hospitalization with a diagnosis for anxiety disorders [ICD-9-CM code 300; ICD-10-CA codes F32.0, F34.1, F40, F41, F42, F44, F45.0, F451, F452, F48, F68.0, F99] and one or more prescriptions for an antidepressant or mood stabilizer; (IV) at least one physician visit with a diagnosis for anxiety disorders [ICD-9-CM code 300] and one or more prescriptions for an antidepressant or mood stabilizer.
This operational definition of depression has been validated and follows prior health research using MCHP health administrative data sets [47,48].We calculated prevalence estimates in two different ways: (1) as the number of people with the chronic condition of interest per 100 population and (2) as the number of people with the chronic condition of interest per 1,000 person-years (PYs), to take into consideration years of coverage over the five years of the study period.Note that administrative data do not directly identify people who had a particular disease of interest; rather, they indicate who used health services for that particular disease or illness.

Data Analyses.
As mentioned earlier, we calculated the prevalence of dementia and depression in two different ways.For descriptive analyses, we reported prevalence as the proportion of the population (%) with dementia and depression.We used Generalized Estimating Equations (GEE; SAS PROC GENMOD, with repeated subject) to test if the rates of dementia and depression (calculated as the number of people with the conditions of interest, that is, depression and dementia, per 1,000 PYs) were statistically higher or lower than the estimated rates for the matched comparison group.The GEE is a method of analyzing correlated data, where the exponent of the estimate indicates the risk ratio (RR) [49].We used the RR and 95% confidence intervals to determine the statistical significance of the observed differences in prevalence estimates.We performed programming and data analyses using SAS software, version 9.1.

Ethics. The University of Manitoba Health Research
Ethics Board, the Health Information Privacy Committee (HIPC) of Manitoba Health, Department of Family Services and Consumer Affairs and the Manitoba Department of Education approved this research.

Results
Between April 2000 and March 2005, a total of 6,048 persons of all ages lived with DD in Manitoba-64.15%males and 35.85% females.As shown in Table 1, slightly higher than 73% of the population with DD were children under the age of 20; 1,619 were adults aged 20+.Of these, 1,401 (or 86.5%) were between the ages of 20 and 54, and 218 (or 13.5%) were 55 years of age or older (Table 1).Of the 218 individuals with DD aged 55+, 101 were males and 117 were females.
As shown in Table 2, among persons with DD aged between 20 and 54 (N = 1, 401), a total of 73 had a diagnosis of dementia during the five-year study period.This translates into a prevalence of 5.21% (95% CI 4.05-6.37).DD cases aged 55+ had almost triple the prevalence at 13.76% (95% CI 9. 19-18.33).Results of statistical testing using the GEE technique showed that a significantly higher estimated prevalence of dementia among both younger adults and older adults with DD than for the matched comparison groups without DD.As summarized in Table 4, we estimated the RR for for the younger adult group at 4.01 (95% CI 2.72-5.92);for the older age group, we estimated the RR at 4.80 (95% CI 2.48-9.31).
As shown in Table 3, 595 (42.47%) of the DD study cohort aged 20 to 54 had a diagnosis of depression during the five-year study period.Among the older population with DD, 84 (38.53%) had a diagnosis of depression.Statistical testing using the GEE technique showed that the estimated prevalence among both younger adults and older adults with DD was significantly higher than the estimates for the matched comparison groups without DD.As Table 4 shows, we estimated the RR for depression at 2.96 (95% CI 2.59-3.39)for the younger adult group and at 2.65 (95% CI 1.84-3.81)for the older age group (55+).

Discussion
The present study extended previous research on the prevalence of mental illnesses among persons with DD by designing a population-based comparative study using the linked data from several administrative databases, covering the entire population of a Canadian province.This study was the first attempt in Manitoba to use a record linkage technique to estimate the prevalence of specific mental illnesses, including depression and dementia, at the population level for persons with DDs.A strength of our study was the use of unique identifiers to link records.This helped us to identify a large number of persons having DDs and the health conditions of interest without duplication.Our methodology, which linked multiple sources of data, improved our ability to identify DD cases living with diagnosed depression or dementia anywhere in Manitoba over the five-year study period.
Overall, consistent with previous research, our findings showed a significantly higher prevalence of dementia and depression in the DD population than in the matched non-DD population.More specifically, we found a four times higher risk of dementia among younger adults with DD than for the matched non-DD group (RR = 4.01; 95% CI (2.72, 5.92)); the risk was almost five times higher for the older age group [RR = 4.8; 95% CI (2.48, 9.31)].Our estimate of the prevalence of dementia in the younger age group, 5.21%, aligns with estimates from previous populationbased studies conducted in the USA, Ireland, and the Netherlands (e.g., [29,50]).Our estimate of the prevalence of dementia in the older age group, 13.76%, is lower than some previously reported estimates (e.g., 30.4% reported by Tyrrell and colleagues) [23], but it aligns with the 13.1% estimate for persons with DD aged 60+ reported by Strydom and colleagues [51].
We found a similar pattern for depression.The risk of depression among younger adults with DD was almost three times higher than for the matched non-DD population (RR = 2.96; 95% CI (2.59, 3.39)).We found a 2.6 times higher  [34].
We estimated the prevalence of depression for the younger DD population at 42.5%, which agrees with the reported estimate of 43.9% in a study conducted in the West Midlands in England [8].It is, however, much higher than the reported estimates of 2.2% [9], 4.3% [14], 8% [11], or 11.1% [7] previously reported.The huge variations found in the prevalence estimates might arise from a number of factors, including variations in the studied populations.Our study used administrative data to identify DD cases and included those with IDs and/or ASDs.Some previous studies focused on the risk of depression among persons with ID only [7][8][9], autism only [10], or a specific type of ID only (e.g., Down syndrome) [12].Other possible contributing factors include the data source and the type of information gathered to identify cases with depression.This study used population-based administrative data to identify cases with depression.More specifically, we used clinical diagnoses or information about prescribed medications to identify those with indications of depression.This method of identifying cases differs from the methods used in prior studies.Some studies used standardized checklists-for example, the Psychopathology in Autism Checklist [15]-or involved interviews with clients and their care providers (e.g., [8]).In addition, some studies only considered cases with severe depression (e.g., [14]).Our study did not distinguish among different types of depression and included all diagnosed cases.
Note that, overall, our reported rates of depression and dementia seem high; this could be due to our reliance on diagnostic codes rather than the definitive diagnoses made by trained specialists for depression or dementia among this particular population.Thus, we may well have included many mild forms of depression not normally included in severe and major depression criteria, as well as cases of misdiagnosed dementia.Over the last few decades, many scholars and researchers have noted and discussed the complexity of diagnosis and taxonomy of psychopathological conditions in persons with DDs.For example, Verhoeven and Tuinier (1997) emphasized the atypical presentation of psychopathological conditions in persons with mental retardation (MR).They described atypical psychopathological presentations, for instance-such as self-injurious behaviour and other challenging behaviours-as symptoms of depressive disorder [52].In addition to atypical presentations of psychopathological conditions by persons with MR, evidence from factor analytic studies indicates that specific psychopathological conditions or symptoms, not classified elsewhere, exist among persons with MR [53,54].Therefore, others have questioned the utility of routine diagnostic criteria for major psychiatric diagnosis among persons with DD, and in particular for those with MR.In this study, we used administrative data sources and mainly clinical diagnoses to estimate prevalence of depression and dementia.Thus, it is important to note that our prevalence estimates are reflective of "administrative prevalence" rather than the true prevalence of conditions at the population level.The true prevalence of the conditions of interest can only be obtained by screening population using standard diagnostic criteria and clinical assessments or by means of well-designed epidemiological surveys.
Our study has several other limitations relevant to any interpretation of the results.First, we used administrative data to identify DD cases.Although we used several administrative databases, we very likely failed to identify all DD cases living in Manitoba, since some people with DD may never have used the existing health services or social support systems or may not have been diagnosed as having a DD.Second, we used only five years of administrative data to identify both DD cases and the mental health conditions of interest.A person with dementia or depression might not have had that particular diagnosis noted in their medical records within the five years of the study.As a result, this study would not have classified such a person as having dementia or depression.Having said that, it is important to note that MCHP researchers validated the dementia and depression operational case definitions based on the health administrative databases against other data sources (e.g., the Canadian Community Health Surveys) and found that they provide reliable prevalence estimates at the population level [55].
Third, although we matched the DD cases with non-DD controls based on age, sex, and place of residence for a more accurate and fair comparison, we selected our control group from the general population.This method of selecting the control group may have introduced some bias, leading to the higher risk ratios obtained in our study.We know that those accessing the health care system (using physicians or hospitals) may have higher rates of comorbidity; they may also receive more comprehensive medical examinations, which could increase their rates of diagnosed conditionswhich, in fact, may have affected the rates estimated in this study.
We want to acknowledge several other limitations of this study.We based our prevalence estimates on several health administrative databases, including data from physician claims.In remote areas of northern Manitoba, nurses (rather than physicians) deliver a high proportion of primary care; since administrative databases do not capture those services, even for mental health issues, this would skew our estimated rates.
Also, as mentioned earlier in the Methods section, we excluded persons from the data sets who had DD and resided in a PCH or were listed with a Public Trustee postal code.Although we explained this decision, we acknowledge that it may have affected our results by excluding a disproportionate number of persons with DD in our original sample who had dementia.
Despite these several acknowledged limitations, the present study stands as the first attempt to use provincial administrative databases to examine mental health issues for persons with DD at the population level.Accurate population-level information on the mental health status and conditions of persons with DD is needed for planning and providing services to meet the specific needs of this vulnerable population.The significant disparities this study found in rates of depression and dementia between persons with and without DD should alert health officials and authorities to the level of mental health needs of persons with DD.The existing policies regarding "community living" and "aging in place" encourage persons with disabilities and those with DD to access the mainstream health services, even for mental health problems.Studies which focused on access to specialized health services, including access to psychiatric services by persons with DD, remain rare, but these studies describe finding a number of barriers [24,56].To reduce disparities in mental health, those involved in planning and providing services to this population should focus on the barriers to accessing mental health services.Also, we must train health care professionals, including family physicians, to screen and assess mental health conditions and problems common among persons with DDs.Furthermore, we need more specialized training for medical staff, including physicians, to assist them with early detection and the provision of quality care to this population.
Researchers recommend prevention as a strategy for reducing disparities in health, including mental health, between persons with and without DD (e.g., [57]).Preventive strategies should focus on modifiable risk factors, including promotion of physical activity, mental leisure activities, and social inclusion and participation-as well as providing meaningful job opportunities and adequate nutrition.Studies also highly recommend early diagnosis and detection of mental illnesses and management of symptoms and behaviours to minimize further complications [58].Our research findings advocate for an increase in populationbased epidemiological research studies targeting the prevalence of mental illnesses and disorders among individuals with DD.We need such research to better understand the extent and scope of mental illnesses in this population and how they vary by age, geography, sex, and diagnostic categories (e.g., mental retardation, ASDs, FASDs).We also suggest that future research consider access to health care, and in particular access to specialized care, as well as continuity of care.

Disclosure
The results and conclusions are those of the authors, and no official endorsement by the Manitoba Centre for Health Policy, Manitoba Health, or other data providers is intended or should be inferred.

Introduction
Compared with the general population, adults with intellectual disability experience significant healthcare inequalities including general health screening, mental health support, women's health screening, and oral healthcare services [1], and this equally applies to adolescents with intellectual disability [2,3].The majority of Australian adolescents (11-19 years) with intellectual disability live with their parents who have the responsibility for the healthcare of their adolescent child [4,5].
Parents are concerned about the health of their adolescents with intellectual disability [6][7][8][9] especially when they can no longer care for them [10].As adolescents transition out of specialist-based pediatric care, they move to the primary care system and general medical practitioners (GPs); this creates additional parental concerns about their child's health [11,12].GPs have expressed concern at being expected to take on a similarly intensive role [13].This study states the major themes expressed by parents regarding the health of their adolescent with intellectual disability.

Method
During a cross-sectional descriptive study which examined the effect of health interventions, interviews with parents were undertaken.This was a six-month cross-sectional descriptive study with qualitative and quantitative data collected.Qualitative data was collected from adolescents with intellectual disability, parents, and the adolescents' teachers.The other findings are reported elsewhere [3].In a semistructured interview parents were asked about the three main health issues relevant to their adolescent in the next ten years.The dominant themes are discussed here.

Results
Thirty-two parents participated, of which 31 were mothers, with a mean age of 46 years, with 21% having tertiary qualifications.They were employed in a range of occupations including home duties, teaching, small business, retail, and nursing.Their adolescent children were described through GP notes and parent/teacher reporting as having mild (3/32), moderate (17/32), severe (11/32), and profound (1/32) intellectual disability.Only 33% (11/32) said that their children were strong and healthy and they had no concerns for the future, and 58% (18/32) said that there were particular areas of their children's health that made them anxious about the future, those being dependency, general health, challenging behaviour, and increasing support needs.
International Journal of Family Medicine 3.1.Theme One: Dependency.Parents made practical observations about the capacity of their children's independence in future health decisions: "He will always be very dependent on us, and the resources we provide and the professional advice we seek."A few parents spoke of independence and how the future was not such a worry for them."Independence-he likes to have his own things.The (health) diary (the study intervention) is his way of telling people about his health without his mum having to talk all the time."3.2.Theme Two: General Health.Weight was most frequently named as the biggest challenge.There were additional concerns about management of medication, epilepsy management, "staying healthy mentally," mobility reduction over time, "getting herself to and from the doctor's when she is not feeling well and knowing when to go," "moving her from the child health to adult health system," and maintenance of health checks.

3.3.
Theme Three: Challenging Behaviours.Parents consider that others outside the school environment will not know about "behavioural issues related to his condition."Another added that her main concern was that of "anger management" and another because "his behavioural issues may affect his social and daily life."3.4.Theme Four: Increasing Support Needs.Parents perceived that they will need support for their own health as they age: "Support structures-we will need support in place as he and I get older"; "Advocacy-someone else needs to be aware of his health needs"; "Someone else to know his normal health-related patterns would be helpful.As his primary care-provider I may not always be around."

Conclusion
These findings are not a comprehensive list of parental concerns, but they contribute to our common understanding of parental health concerns for the future of their adolescent with intellectual disability.

Introduction
Autistic spectrum disorders (ASDs) are developmental disorders estimated to affect 1 in 150 children [1].They are characterised by social communication impairments, limited imagination, and repetitive behaviours.Learning difficulties are overrepresented, but not always present.Increasing professional awareness has led to higher levels of diagnosis and support, possibly explaining the recorded rise in prevalence over the last 30 years [2].ASD is commoner in males (M : F autism 4 : 1, aspergers 10 : 1).Genetic factors are complex, and no single gene mutation or chromosome abnormality has been linked [3], although the condition has the highest heritability of any psychiatric disorder (approximately 90%) [4]; the risk of having a second child with autism is increased by 20-30.
The National Autism Plan for Children (NAPC) emphasises the importance of early intervention and close collaboration between parents and professionals and provides a gold standard for services [3].Benefits for parents include increased capacity to seek information from external sources and make use of available health services [3].
Diagnosis of children with ASDs requires multiagency and multidisciplinary collaboration.In 1998, an assessment team was established in one sector of Manchester.This service involved sessions from child and adolescent psychiatrists (CAP), community paediatricians (CP), CAMHS practitioners, specialist speech and language therapists (SALT), and educational psychologists (EP).The successful format was established city wide in 2000.The multiagency teams are called Social Communication Assessment and Intervention Teams (SCAITs) [5].Service provision within CAMHS needs to make the best use of limited resources [5].
In addition to the core symptoms, there are other common features [6], such as abnormalities in sleep and mood.For a diagnosis of ASDs to be made, there must be both symptomatology and an impact on functioning [3].If there are concerns during developmental screens, specific screening for autism is strongly encouraged.Parental concerns provide vital information for early diagnosis [3].Specific diagnostic instruments are available and should be used alongside clinical judgement.Most commonly used is the Autism Diagnostic Observation Schedule (ADOS) [3]; International Journal of Family Medicine however not all characteristics may be demonstrated during the test.Observations should be conducted in different settings including clinics, homes, and schools.
ASD is a developmental disorder; symptoms can vary in severity at different times.Difficulties can become more apparent when changes in routine occur, for example, starting a new school, and this is often when children are referred.The benefits of early identification of ASDs are recognised by parents and professionals alike [3].The diagnosis of autism, however, is often not made until 2 to 3 years after symptoms are recognized [3].Evidence suggests that early intervention can lead to improved outcomes for most children [7].Earlier diagnosis facilitates earlier educational, social, and medical support.It is also important to reduce waiting times from referral to intervention.There are considerable demands on parents as they accept and adjust to their child's communication and social interaction impairments [3].
Many people seek information on their own, from other parents, websites, books, and autism groups and newsletters [3].Children and families want accessible mental health services which provide support when needed and involve them as users.They also want to know what services are available to help them support their child [3].
The NAPC guidelines address identification, assessment, diagnosis, and access to early interventions for children with ASDs.It recommends a three-stage assessment framework.Stage 1 is a general multidisciplinary developmental assessment for any child with possible developmental problems.Stage 2 is a multiagency assessment.The assessment should be completed and fed back to the family within 17 weeks of referral.A written report should be produced and discussed with the parents.Stage 3 addresses the need for tertiary referral.The local team may need this for reasons such as specific advice about treatments.The NAPC states that feedback to parents should include information about services, for example, The National Autistic Society (NAS).
In Manchester, all SCAIT professionals receive training in assessing ASDs.Monthly SCAIT meetings involve liaison work with community paediatricians and preschool special needs workers.Direct referrals are accepted from general practitioners and paediatricians.Referrals from educational psychologists, health visitors, and school nurses are accepted if the general practitioner or a paediatrician is informed.The team generate a plan tailored to each individual regarding diagnosis and care.
Parent intervention programmes can enhance interaction with children, promote development, and increase parental satisfaction and mental health [3].SCAIT offers five 2-hour sessions: Understanding ASD, Understanding and managing behaviour, Understanding and working with the education system, Enabling your child's communication and understanding, and Further resources for you and your child.

Aim
To assess parental satisfaction with SCAIT assessments and compare the service with the NAPC Guidelines.

Method
Parents and carers of the 35 children diagnosed with ASDs from December 2008 to May 2010 were invited to participate.Questionnaires and a covering letter were sent out with a self-addressed envelope.Participants were invited to have a telephone or face-to-face alternative to complete the questionnaire.The work was undertaken as an audit, thus ethical approval was not needed.A previous Manchester audit tool was enhanced to provide further information about the postdiagnostic group (Appendix 1).Questionnaires were scored according to total satisfaction, and satisfaction in each of the 4 areas of the assessment process.Compliance with the NAPC Guidelines was also recorded.

Results
Thirty-five questionnaires were posted, and 20 (57%) parents participated, with 1 father responding.Of the 20 participants, 1 parent completed the interview via telephone and the other 19 returned the questionnaire by post.The child's age at diagnosis and the present time showed 2 peaks (Figure 1), consistent with transition to primary and secondary school.
Most parents (86%) were especially satisfied with the assessment process (Table 1), but less happy with the information received before and after the assessment.
Most parents felt they were well informed about the assessment before the appointment, with 65% receiving information.However, 14 would have liked to have known the different parts of the process, and 8 wanted to know the questions they would be asked.About half of parents would have liked to have known the name and professional background of the clinician (Table 2).
Nineteen parents felt they were definitely listened to carefully, with the final patient choosing yes to some extent.Additionally, 18 parents felt they were able to discuss their concerns and give feedback at the time of assessment, and 80% felt the assessment could not have been communicated differently.The family who needed an interpreter reported that the information they were provided with before the appointment was very poor, although they believed the actual process was good.
Notably, 85% of parents would have liked a letter with a plan for further assessment and appointment dates.Most parents had received a report which 65% claimed to definitely understand, with 20% understanding to some extent.Parents would have liked less medical terminology in the reports.Eighteen parents had the opportunity to give feedback at the time of the assessment.However, 59% stated they either did not have any say or only to some extent.All of the parents said they were able to ask questions at following meetings.
With regards to the postdiagnostic workshops, 8 parents received information regarding the aims.When parents are invited to attend the sessions, written information about the course is also sent with the letter.However, the 8 who did not answer may not have been invited.Every respondent was happy with the assessment process, with 60% reporting it to be very good, 100% of parents said they were definitely treated with trust and dignity.After the assessment, 100% of patients were happy with the level of information they had regarding the process.Although 18 parents received additional information in some form, 6 felt they had not received enough information about the condition and future interventions.With regards to the postdiagnostic workshops, only 15 parents said they were invited to attend.The reasons for this were not explored, although one patient did report moving house.When asked why they were unable to attend, Childcare was a key theme as was timing.Looking at the time interval from referral to diagnosis, great variance was apparent (Figure 2).The average time was 46 weeks with only 6 diagnoses reported in the recommended time frame of 17 weeks.Of note, the child with the shortest timeframe from referral to diagnosis was the least satisfied, while the longest timeframe elicited the highest satisfaction score.The results show 2 peaks, with satisfaction higher at the times of school transition (3-5 and 10-12 year olds).

Discussion
One weakness was size, although sampling the past 18 months allowed the collection to be achieved within the allocated timescale.If the study was increased to the past 3 years, the results may show a more significant trend, although parents might find the process harder to recall.
International Journal of Family Medicine 5  One solution might be administering the questionnaire as a standard part of clinical practice.Parents wanted more information regarding diagnosis and management.A longer follow-up appointment after diagnostic feedback could allow needs to be individually assessed.During this appointment, professionals could discuss the purpose of the postdiagnostic workshops.The information provided during these workshops is obviously most beneficial when attending the group sessions, as they are interactive and parents have the opportunity to share experiences and strategies.However, if all parents received the written information provided within these sessions, it would be helpful to those who could not attend.As childcare and timing were the commonest reasons for nonattendance, this could be addressed by combining all 5 sessions into 2 days within school hours.
Written communication could be enhanced by a standardised response letter from the SCAIT team.This could include the role of SCAIT, the purpose of the assessment, the appointment time, the assessment structure and timescale, the name and profession of all clinicians, and possible question areas.This should help ease parent's anxiety and ensure that scarce appointments achieve maximum benefit.Finally, the assessment report needs to be clear and concise.The initial page should contain a standardised format with the outcome clearly stated, the individuals and professional roles of those involved, and the date of the diagnosis.
Although, most parents were happy with the assessment service, satisfaction could be increased by providing more information about the assessment as well as the condition.It is important to actively involve parents in the sessions, allowing them to build a trusting relationship with the health professionals involved as children may need support from 6 International Journal of Family Medicine the team for many years.Giving each family the time to discuss their concerns will also help tailor individual needs and further increase parental satisfaction.The fact that parents are considerably more likely to have a second child with ASDs emphasises the importance of engaging families.
The study was fed back to SCAIT, and standardized letters and workshop information sheets have already been implemented.Furthermore, the team will complete the audit loop by undertaking the audit again in 18 months time.This study has provided a key opportunity to offer a value-added service with service-user feedback.

Figure 1 :Figure 2 :
Figure 1: Levels of Intellectual Disability by age groups.

Figure 1 :
Figure 1: Ages of children participating in audit.

Figure 2 :
Figure 2: Time period between referral and diagnosis.

Table 1 :
Study group characteristics.

Table 2 :
Health risks and disabilities.
4.3.9.Polypharmacy.Consultant physicians reviewed the physical health, investigated where appropriate and suggested changes to a medication regimen when necessary.In general, few changes were suggested to existing medications for medical illnesses, and there were few in which new diagnoses were made.Fifty per cent of the group were taking anticonvulsants, 20% antidepressants, and 26% antipsychotics as shown in Table4.A large proportion of the study group (47%) were taking more than one class of psychotropic medication.4.4.Hospitalisations.In the four-year period, from January 2006 to December 2009, 68 of the people in the study were noted to have been hospitalised (22 of 86 aged 15-44 yrs, 20 of 50 aged 45-64 yrs, and 26 of 26 aged 65+ yrs).There were 77 Day-only admissions and 100 overnight stays, to any of the four hospitals in the region under study

Table 1 :
Social demographic characteristics of caregivers.

Table 2 :
Risks of depression levels in the caregivers.

Table 3 :
Social demographic correlates of depression.

Table 1 :
Distribution of study subjects by age group.

Table 4 :
Age-specific depression and dementia RRs comparing those with a DD diagnosis to the matched cohort without a DD diagnosis.

Table 1 :
Average satisfaction rates with the assessment process.

Table 2 :
Information provided before the service.

Table 3 :
The assessment process.

Table 4 :
Relationship with the professional performing the assessment.Did the professional listen carefully to you?

Table 5 :
Outcome of the assessment.

Table 6 :
Written information.At the end of the assessment did you have enough information regarding the process?