Intellectual Disability Supplement to the Irish Longitudinal Study of Ageing IDS-TILDA

Professor Mary McCarron PI and Members of the IDS TILDA team

1. Sense of belonging and community living

Research Question:

Is the sense of community belonging for older people with intellectual disabilities similar to that reported for other older adults.

Study Aim:

1. To explore the sense of belonging to local community among the IDS-TILDA sample using questions added in the IDS-TILDA wave 3 protocol to support examining reciprocal community relationships and the factors associated with having a sense of belonging in one’s local community.
2. To examine associations between having a sense of belonging to local community and health and quality of life outcomes outcomes.

Background/rationale:

A sense of belonging driven by reciprocal or interdependent relationships is identified in the general community literature as fundamental to one’s sense of belonging in communities with additional implications for health, mental health and quality of life. There has been little research examining similar ideas among persons with an intellectual disability.

Methods:

Secondary data analysis of wave 3 data from IDS TILDA. As part of PhD training student will receive formalized training in the administration of a computer assisted protocol, participate in a multidisciplinary research team and will be expected to complete data collection interviews and to assist in interview scheduling, data cleaning and analyses. The supervisory team will be multidisciplinary and include international scholars.

2. Comparing the cardiac risk profile of ageing persons with intellectual disabilities and the general ageing population.

Aim:

To understand differences and similarities in the relationship between risk factors and incidence of hypertension and heart disease in people ageing with an intellectual disability as compared to the general ageing population.

Background:

In the general population there are well established risk trajectories in terms of ratings of obesity, frequency and intensity of physical activity and markers such as cholesterol. It is well reported that hypertension and cardiac disease do occur for people with intellectual disabilities but not at the rates that would be expected given the presence of elevated levels of risk and low rated and minimal intensity reported for physical activity. Such overall findings require further investigation if the relationship between risk and incidence is to be more fully understood.      

Method:

Utilizing matched data from the waves of both the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing and the Irish Longitudinal Study on Ageing general population sample the relationship between risk at wave one and actual incidence of hypertension and cardiac disease in subsequent waves will be examined, differences in patterns of risk considered and identification of possible different and additional risks explored.

As part of PhD training student will receive formalized training in the administration of a computer assisted protocol, participate in a multidisciplinary research team and will be expected to complete data collection interviews and to assist in interview scheduling, data cleaning and analyses. The supervisory team will be multidisciplinary and include international scholars. 

3. Understanding Physical activity patterns in persons ageing with an intellectual disability.

Aim:

To determine the health effects of low levels of physical activity and low intensity levels when physical activity is undertaken among people with intellectual disabilities as they age

Background:

It is well established that people with intellectual disability have low levels of physical activity in their daily lives and that when physical activity occurs it almost always is of low intensity. Physical activity recommendations in order to obtain health benefits are for a sustained level of activity usually at a moderate level of vigour. The value of low intensity activity for people with intellectual activity has not been explored.

Method:

Secondary data analysis of data from all three waves of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing will examine actual level of physical activity over time in terms of frequency and vigour and will link this data will chronic health condition data to explore wat level of physical activity appears to have protective health and improved quality of life effects for people with intellectual disabilities.  

As part of PhD training student will receive formalized training in the administration of a computer assisted protocol, participate in a multidisciplinary research team and will be expected to complete data collection interviews and to assist in interview scheduling, data cleaning and analyses. The supervisory team will be multidisciplinary and include international scholars.

4. Understanding gastro-intestinal disease in aging people with intellectual disabilities

Aim:

To examine both the incidence and the predictor of gastro-intestinal disease in ageing people with intellectual disabilities

Background:

As compared to the general population people with intellectual disabilities appear to have much higher rates of constipation and gastric reflux, are prescribed a greater variety and quantity of medications for these and other conditions which may be contributing to further gastro-intestinal problems.  Yet follow-up on such conditions also appears to be less for people with intellectual disabilities.

Method:

Utilizing matched data from the waves of both the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing and the Irish Longitudinal Study on Ageing general population sample the relationship between risk at wave one and actual incidence of gastro-intestinal diagnoses in subsequent waves will be examined, differences in patterns of predictors considered and identification of possible different and additional risks explored.

As part of PhD training student will receive formalized training in the administration of a computer assisted protocol, participate in a multidisciplinary research team and will be expected to complete data collection interviews and to assist in interview scheduling, data cleaning and analyses. The supervisory team will be multidisciplinary and include international scholars.

5. Meaningful day activities and fulfilling life roles

Main research question:

Understanding the relationship of meaningful activities and fulfilling life roles to the sense among people with intellectual disability (ID) that they are aging well.

Background/rationale:

There are growing challenges in the daily lives of people with intellectual disability as day service delivery becomes more restricted and there is greater likelihood that in older age many will continue to live with family. It has become of more critical importance to understand how ageing people with ID are currently spending their day and how they would want or prefer to do so.  

Methods:

Secondary analysis of wave 3 data from IDS TILDA specifically new questions on occupation/day activities that include the completion of a daily diary by or for the person with ID interviewed. As part of PhD training student will receive formalized training in the administration of a computer assisted protocol, participate in a multidisciplinary research team and will be expected to complete data collection interviews and to assist in interview scheduling, data cleaning and analyses. The supervisory team will be multidisciplinary and include international scholars.

6. Carer’s Study

Aim:

To expand our understanding of the changing roles and changing family members engaged in caregiving for people with an intellectual disability in Ireland

Background:

Changing demographics of people with intellectual disability from a younger to an older population, and movement from institutional and residential based to a more community based model of care has growing implications for family caring. Continued living with families in familiar communities has been reported to have advantages for the person with an intellectual disability (for a review see Seltzer and Krauss, 2001), but concerns also been raised about the impact of lifelong caregiving in terms of physical and economic burden for family members who are themselves ageing and dealing with their own health concerns (McCarron & McCallion, 2007; Lightfoot & McCallion, 2015).

Method:

Some of these issues were addressed in prior surveys of carers and in Wave 3 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing it is proposed to:

The PhD student will be responsible to gather quantitative and qualitative data from approximately 80 family carers.  As part of PhD training student will receive formalized training in the administration of a computer assisted protocol, participate in a multidisciplinary research team and will be expected to complete data collection interviews and to assist in interview scheduling, data cleaning and analyses. The supervisory team will be multidisciplinary and include international scholars.

7. Quality of life for people with ID as they age

Main research question:

How useful are established quality of life measures in measuring and understanding what is most meaningful for people with intellectual disabilities as they age

Background/rationale:

Methodological challenges in the measurement of subjective aspects of people’s lives is well-documented in the literature for all people with intellectual disability (ID) and particularly for people with severe and profound ID.  

Methods:

Secondary analysis of wave 3 data from IDS TILDA specifically the newly added quality of life measure will be undertaken with testing of psychometric properties and examination of the usefulness of the measure for in person and proxy interviews. Comparisons with other measures In IDS-TILDA will help to establish validity.  For a subgroup of IDS-TILDA participants with severe/profound ID additional data form observations and case note histories will be utilized to build a more holistic picture of the individual’s quality of life to compare with the picture emerging form proxy interview.
As part of PhD training student will receive formalized training in the administration of a computer assisted protocol, participate in a multidisciplinary research team and will be expected to complete data collection interviews and to assist in interview scheduling, data cleaning and analyses. The supervisory team will be multidisciplinary and include international scholars.

8. End of life Care for  Persons with Intellectual Disabilities

Aim:

To understand if over time the availability and quality of end of life care offered to people with intellectual disabilities in their last days has improved.

Background:

Traditionally older people with intellectual disabilities have not been a target population of hospice and palliative care providers. Public policy since 2001 has encouraged their inclusion but beliefs that they will not benefit and would be difficult to include continue to be a barrier to inclusion. Data from carers of participants with ID who had died was collected in a separate protocol in Wave 2 of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) and provides for the first time a baseline picture of participation in hospice and palliative care by people with ID in Ireland.

Method:

In wave 3 of IDS-TILDA the carers of all those who have died since wave 2 will be contacted and interviewed on the process and experience of death by those individuals including their accessing of and satisfaction with hospice/palliative care services both in ID services and in general community based services. A standardized protocol utilizing quantitative and qualitative questions will be utilized.  Data will be compared with the findings of the wave 2 baseline.
As part of PhD training student will receive formalized training in the administration of a computer assisted protocol, participate in a multidisciplinary research team, and will be expected to complete data collection interviews and to assist in interview scheduling, data cleaning and analyses. The supervisory team will be multidisciplinary and include international scholars.