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Results from Wave 1:

Demographics

A total of 753 people with ID representing 8.9% of the ID population over the age of 40 years were randomly selected from across Ireland and consented to take part in the study. Three waves of data collection are planned and the first was successfully completed.

The IDS-TILDA sample successfully recruited is primarily aged 50-64 years but has participants of all ages over 40 years, male and female, and includes all levels of intellectual disability and living arrangements.

Findings

Life in Families and Communities.

  • Largely an unmarried group that do not have children, most are unemployed and are living in out of home placements with 63% having access to 24 hour support and the majority attending a day programme. The findings here support international concerns that societies have done a better job of increasing the community presence of people with an ID than facilitating opportunities to actually live within the community.
  • The majority of adults had some level of contact with at least one family member but one in four reported meeting their family once a year or less and frequency of contact declined with increasing age and was less for those with a severe to profound ID.
  • Over three quarters of adults with an ID reported that they never wrote, texted, emailed or used social media tools such as Facebook to contact their family or friends. Moreover, less than 60% used the telephone and they were less likely to own a mobile phone than other Irish adults.
  • Older age, more severe levels of ID and living in residential centres often meant having fewer members in one’s social network and greater risk for social isolation.
  • Approximately 70% of adults with an ID in Ireland did not vote in the last general election.

Most adults with an ID had a hobby, went on holidays or day trips, engaged in regular daytime activity and leisure pursuits and had social contacts with others. However, they reported that they seldom engaged in social activities with friends outside their home and that families had limited roles in their lives.

Physical and Psychological Health

Many in the IDS-TILDA sample, particularly those in the younger age cohorts, reported experiencing good health but there were significant concerns in terms of cardiac issues (including risk factors), epilepsy, constipation, arthritis, osteoporosis, urinary incontinence, falls, cancer, and thyroid disease.

  • Younger adults with an ID had a much higher incidence of disease and identifiable risk factors for conditions such as coronary artery disease and stroke, than same age and older cohorts in the general population.
  • A high prevalence of falls in the younger age cohorts with ID (24.5% for those aged 40-49 years) was comparable to fall rates reported for those in the general population aged 75 years and older. Among people with Down syndrome 13.4% reported having experienced a fracture and high incidence of hip fracture among this group; yet just 8% reported having had a DEXA scan. Women with ID had higher risks for many diseases, both when compared to men with ID and to women in the general population.
  • While health checks were high overall, access to health screenings was lower for people with severe to profound ID.
  • There appeared to be good access to physicians and dentists for all but one in three adults with an ID reported that they found it difficult to make themselves understood when speaking with health professionals.
  • Lower rates of hypertension were found among those with Down syndrome, despite findings that one third of this population had high cholesterol and three quarters were overweight or obese.
  • Nine out of 10 participants (91%) were taking at least one (prescription or non-prescription), medicine.
  • Adults with ID were twice as likely to have significant visual problems and at a much younger age than the general population. Persons within the severe to profound range of ID were less likely to have had an eyesight test. 
  • Irish adults with an ID reported that they hardly ever engaged in vigorous physical activity. Those who did engage tended to be men in the younger age groups. However, 80% did engage in some form of physical activity, at least once a week.

The prevalence reported for mental health and emotional problems was greater among persons with an intellectual disability (ID) than in the general population with 47.5% reporting that a doctor had told them that they had an emotional, nervous or psychiatric condition. Memory impairment was reported by 15.8% of respondents with Down syndrome, considerably higher than the 3.6% for individuals with an ID from other causes.
Overall, people with an ID reported being satisfied with their healthcare and compared to the general population, they were more likely to report a long-standing relationship with their primary doctor and other healthcare professionals (probably due to greater likelihood of having spent adult years in services, including residential care). However, more than half (56.5%) of participants reported they had never received easy to read leaflets on keeping healthy and three quarters said they had never received easy to read information leaflets on healthcare services. Despite higher levels of chronic illness and disability, older adults with an ID were less likely than other older adults in the general population to be admitted to a general hospital.

Access to the Community and Employment

Regardless of level of ID, the majority of people with an ID were reliant on staff to access programmes or employment.

  • There was a high level of attendance at day programmes rather than engagement in paid employment.
  • Levels of income secured through wages and disability allowances by people with an ID would be equated with poverty by other Irish citizens.

Many people with an ID did not know how much money they had available, did not collect those funds for themselves and relied upon service providers’ central funds to manage the dispersing and use of these resources.
Beliefs and Attitudes
Beliefs about and experiences of happiness, choice and ageing were examined.

  • Experience of happiness, pleasure and enjoyment of life reported by people with an ID was comparable to reports for the general population.
  • Overall, adults with an ID reported having a good level of choice in relation to basic day-to-day issues in their lives, such as the food they eat, clothes they wear, and how they spent their free time.
  • However, three quarters (75.4%) reported having no choice in relation to where they lived and 85.5% reported that they had no choice in relation to whom they lived with.

Adults with an ID expressed typical concerns associated with advancing years, the main issues here being loss of family and friends, increased dependence and fear of death.

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