Ageing in Persons with an Intellectual Disability: Lessons from IDS
TILDA
Professor Mary McCarron, Dean of the Faculty of Health Sciences and Professor of
Ageing and Intellectual Disability Trinity College Dublin.
Opening Statement
I would like to thank the Chair and the members of the Joint Committee on Health and Children
for the opportunity to discuss ageing in people with intellectual disability (ID), and the
implications for the design and implementation of policies to support their quality of life.
In the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing, also called
IDS-TILDA, two waves of data have already been collected, and 753 people with an Intellectual
Disability (ID) aged 40 years and older have participated from across Ireland, with help from
their families and other carers. I have provided as background the project summary of the IDSTILDA Wave 2 Report, and I would like to highlight some of the most critical issues.
This is the first time in history we have had a population of people with an intellectual disability
reaching old age, with average lifespans for people with Down syndrome (DS) in Ireland rising
from 9 years in the 1930s to over 60 years and older today.
While this advance is to be celebrated, there are some serious health concerns that we need to
better understand, as illustrated in recent work with Census and National Intellectual Disability
Database data, where we found mortality rates still almost four times higher in the ID
population than in the general population, with average age of death at 55 years, 19 years
earlier than the 74 years average age at death for the general population.
People with intellectual disability ARE living longer but there are some serious gaps in our
knowledge as to how they age. Other countries have not found a successful way to include
people with intellectual disability in longitudinal studies on ageing. Ireland is the first country
in the World to have included people with an ID in tandem with a general ageing study.
IDS-TILDA is
- supported by the Health Research Board and the Department of Health
- improving understanding of how people with intellectual disability age in their own right,
- supporting direct comparison with data from other groups of older adults
- highlighting how disability, education, life style, living situations, social networks, health
concerns, health service utilization and environmental factors are supporting or thwarting
successful ageing for people with ID.
I would like to highlight six areas that are covered in more detail in the full IDS-TILDA report:
dementia, epilepsy, osteoporosis, accessing needed information, supporting families and
understanding transitions from restrictive settings.
Dementia
Recent findings from IDS-TILDA found that in the three year period since the first wave of
data collection was conducted in 2010, the prevalence of dementia among people with
Down syndrome has almost doubled from 15.8% to 29.9%. Other studies have documented
51 years as the average age of onset of dementia for people with Down syndrome with some in
their early 40’s, much younger than that of the general population where onset is usually over
age 65 years and prevalence is estimated between 4 and 8%.
The National Dementia Strategy has specifically identified people with Down syndrome as a
priority area for improvements in services. Twenty years after international guidelines were
issued on care and assessment of dementia in persons with Down syndrome, many still
struggle to get a diagnosis. When there is a diagnosis, their traditional intellectual disability
services providers often feel they lack expertise in needed care and when they seek assistance
from general health care memory clinics, hospitals and palliative care providers find little help.
People with Down syndrome and dementia are falling between care systems, often with no-one
accepting responsibility; also true for people with other intellectual disabilities.
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Assessment of dementia and diagnostic is much more complex in this population,
Pre-existing intellectual impairment, communication difficulties, co morbid health
conditions as well as environmental issues all contribute to the complexity of diagnosis.
However, findings that people with Down syndrome are at increased risk of dementia should no
longer be a surprise to health professionals and care systems; the evidence is clear.
Recommendation: IDS-TILDA confirms that dementia is experienced earlier and more
frequently for people with ID. Models of best practice (for example the dementia specific service
at the Daughters of Charity Service) should be nationally available and accessible.
Epilepsy
The prevalence of epilepsy in persons with ID was reported at over 30%, which greatly
exceeds the less than 1% reported for the general population. Epilepsy also appears to
increase with severity of ID, and to increase further in the fourth and fifth decades of life for
people with DS, with rates of 78% -98% coincident with the onset of Alzheimer’s disease.
Recommendation: The IDS-TILDA study demonstrates that epilepsy is a common and
complex problem amongst older people with ID. As epilepsy clinics and specialized services
are developed and supported for the general population, there must be attention to the specific
needs of people with intellectual disability and epilepsy within these services.
Osteopenia and Osteoporosis
In Wave 2 IDS-TILDA rates of diagnosed osteoporosis were 16.4%, which is a little higher than
general population at 14.3% (2). However, when measured objectively very high levels of
osteopenia (37% compared to 14% in the general population) and osteoporosis (35% compared
to 28%) were discovered.
This means seven out of ten people with ID over the age of 40 had poor bone health, most
were undiagnosed, and primary care and other health practitioners are unprepared for the
rates of poor bone health and may not be considering such morbidity in their treatment of other
conditions and identification of pain concerns. Given this added risk loading for poor bone health
in people with ID, it is concerning that screening levels were low at 25%.
Recommendation: Given the evidence of under-diagnosis of Osteopenia and Osteoporosis,
strategies are needed for objective assessment and targeted interventions for people with ID.
Accessing needed information
Over 3/4ths of IDS-TILDA participants reported not being able to read instructions, such as
those on a medicine bottle, or health promotion material; 2/3rds could not read easy-read
material without assistance, half (52.8%) could not sign their name without assistance and half
could not recognize basic numbers (2).
This means that many people with ID will not understand information given by a doctor or
nurse. It is not enough to simply display easy-read material in the waiting room.
Recommendation: IDS-TILDA has demonstrated that service providers and health care
professionals often fail to communicate in a manner that enables people with an ID to genuinely
understand the care they are being offered. As we move more people with ID into the
community more serious efforts are needed to truly organize and resource primary care, social
care and hospital settings to ensure that poor delivery of information is no longer a major barrier
to people with an ID attaining choice and control over their health.
Supporting Families
Family networks of older people with ID in Ireland look very different compared to the
general population- older people with ID are generally single/unmarried and without any
children or grandchildren who might care for them in old age.
- As adults, the majority of people with ID are cared for at home, often by older family
carers who have their own health needs. Many will also be cared for by their siblings.
Sibling carers, part of the ‘triple-decker sandwich generation’ reported higher levels of carer
strain than parent carers. Two thirds of family carers gave over 59 hours per week of care and
back pain, high blood pressure, aching joints and stress and tension were particularly prominent
among carers and 48% spoke of feeling completely overwhelmed.
Recommendation: The IDS-TILDA evidence strongly suggests that a critical component in
reducing reliance on congregated settings will be the quality and resourcing of supports for
family care givers. Those needs must be addressed in public policy responses.
Transitions from Restrictive Settings
IDS-TILDA was launched in 2008 as Ireland had begun its latest effort to move people with ID
from congregated settings to the community. The goal is moves that will improve the quality of
people’s lives but movement alone will not achieve this. Wave 1 of IDS-TILDA has provided the
baseline information on what lives were like before these moves began, Wave 2 has captured
the initial moves of approximately 120 persons. Of these, only 30 moved from congregate to
community settings; most moves to date were lateral moves to the same type of setting.
Recommendation: There is a need to understand both the progress and the outcomes of
contemporary advances in use of community-orientated services for people with an ID. IDSTILDA already provides baseline information on people’s lives including quality of life,
relationships, and health prior to the move. There must be a commitment to monitoring and
tracking what happens post move. Forthcoming waves of IDS-TILDA offer that opportunity.
In conclusion
As Ireland launches its health reform policy agenda, key policy documents including the Healthy
Ireland – A Framework for Improved Health and Well-Being 2013-2025 and Move from
Congregated Settings have set forth opportunities and challenges for the ageing of people with
an intellectual disability. TILDA - The Irish Longitudinal Study on Ageing is gathering and
presenting general population data to inform these efforts. IDS-TILDA is ensuring that there is
the same high quality data on people with ID. The data is raising the visibility of the needs and
experiences of persons with ID as they age, and encourages the cross-walking of that
information between specialized ID services and generic public health environments. It ensures
there is evidence to underpin policy so that not only can we ensure that we have added years to
life for people with ID as they grow old but also, and critically, that we have added life to years.”
I am happy to answer any questions that may help your committee consider how people with
intellectual disabilities and their ageing needs may be better considered in your deliberations.
It is my hope that this committee will accept the challenge of ensuring that the data being
gathered by IDS-TILDA is utilized effectively in the formulation of policies around disability,
health and ageing. Ageing in poor health for persons with an Intellectual Disability can be
considered an empty prize!
Thank you for the opportunity to make this presentation.