Quality of life of elderly people with intellectual disability. A life worth living.

Quality of life of elderly people with an intellectual disability

Elderly people with intellectual disability (ID) are a fast growing group of people in care systems. Their ageing parallels the ageing of the general population. Bigby (2004) states that the current cohort of elderly with lifelong disabilities is the first to grow into old age. This group has its own characteristics, specific needs and problems, that differ from those ageing without lifelong disabilities, and from their younger counterparts with ID. Their physical needs increase, their financial situation is different from those without lifelong disabilities, and their network fall apart easily (Fesko et al., 2012; World Health, 2001). They thus need different support strategies.

However, in Dutch speaking countries research on Quality of Life (QoL) of elderly persons with ID and on factors that influence their QoL is rather scarce. The existing research has a strong focus on physical wellbeing or on Alzheimer's disease in down syndrome. Care providers at home, in elderly care and in ID care ask for broader insights in the QoL, and want to acquire competences and learn methods to better support this group of elderly persons.

This study has three aims:

1. We first want to learn which are generic and specific indicators of good QoL of elderly with ID, and find a way to measure their QoL validly.

Based on Research Part 1 (Systematic Literature Review) and focus group interviews in Research Part 2 (Development of a questionnaire), we compose an extensive overview of elements indicating QoL of elderly with ID. We will investigate QoL outcomes of elderly with ID in Belgium in Research Part 3 (Survey), using questionnaires which we developed or adapted and checked against this overview.

We use an operational model of QoL, well known in ID care, described by Schalock, Verdugo, Buntinx and Claes (Buntinx & Schalock, 2010; Schalock, 2004a; Schalock & Verdugo, 2002; Schalock et al., 2015; Claes, in Warnez et al., 2012). This model has been thoroughly researched, it mirrors the recent paradigm shift from a medical view on ID to a ‘citizens view’, and insights gained with the model are easily translated into daily practice.

QoL is a universal concept, but needs specification in indicators that might differ between groups. Many indicators of QoL of elderly with ID are similar to those of ageing persons without lifelong ID: all like to be connected with family, all like to engage in meaningful activities, and  no one likes to suffer pain. Nevertheless, strong clues indicate differences in the way elderly with ID experience QoL (Bigby, 2004; Janicki & Ansello, 2000). They specifically enjoy or suffer more from peers in collective residences, they look back on lives marked by disability, and suffer greatly from the loss of parents, who took care of these elderly until very high ages.

We want to find a way to measure QoL of elderly persons with ID in a valid and functional way. Assisted by a master's student, we examine relevant questionnaires for persons with ID and for elderly, and  we decide which items are relevant for these elderly people. Other master's student study, in the context of their thesis, related topics, such as dementia, social relationships or loneliness, ... in elderly people with ID - data which enrich our item pool. Based on the systematic review, the results of focus group interviews and the master theses, we develop a questionnaire, that we will use in Research Parts 3 and 4. We assume that in this way we will develop the best method to measure QoL of elderly with ID.

2. A second aim is to research which variables influence QoL of elderly with ID (Research Parts 1, 2, 3 and 4). 

QoL is influenced by individual and environmental determinants (Maes & Petry, 2000). We make use of a Program Logic Model that describes client and environment characteristics (Input factors), actions, methods, strategies, programs, … undertaken by caregivers (Throughput factors) and QoL Outcomes factors influenced by these input and throughput variables (Schalock & Bonham, 2003; Wasserman, 2010).

By caregivers or care providers we mean family and other non-paid, informal carers and / or paid services, such as home help, ID care, elderly care and health care. Organizations provide support on a meso level, governments support on a macro level.

Our systematic review (Schepens et al., 2017a) and focusgroups reveal that the factors determining QoL of elderly persons with ID are partly similar and partly different from elderly persons without ID or from younger counterparts with ID. Level of ID and abilities, a life history coloured by ID, more severe and earlier health problems and many disruptions in their life course are specific characteristics of elderly with ID. Their networks are smaller and easily evaporate, professional supporters change regularly. Elderly care and hospitals not always have the expertise to support these persons. Transport is expensive, these elderly can seldom drive a car, an lack of transportation hinders their inclusion in community networks and preferred activities. In case of dementia or palliative situations, services have difficulties re-organizing staff to meet the present needs. ‘Ageing in place’, as ‘being able to stay in a preferred place as long as one wants’, may be the ideal, but seems difficult to realize in daily practice.

We make a selection of the most relevant determinants in our questionnaire. We plan a large-scale survey using the developed questionnaires on QoL and QoL-determining input and throughput variables. Thus we want not only to examine how good of bad the QoL of elderly with ID is in Belgium, but also which actions, methods, strategies and programs, undertaken by supporters, have a significant influence on their QoL (Research Part 3, Survey). As such, we will specifically investigate the influence of physical, psychological and social frailty on QoL, and research whether these influences are moderated or mediated by the quality of physical, psychological and social frailty support.

In this way we hope to offer supporters clear, valid and reliable support strategies, that positively influence the QoL of elderly with ID.

We build our project on research done by Vandevyvere et al. (2010) and involve different care partners in ID and elderly care, home help, foster care and informal care, for they all support elderly with ID. Furthermore, these care settings have good reasons to cooperate, as minister Vandeurzen promotes in Perspectief 2020 (Flemish ID-policy act) (www.vaph.be).

3. Finally, we remarked that some QoL indicators appear in age-specific models (Dezutter, 2014; Marcoen et al., 2006), but not in the ID-specific model we use (Schalock, 2004b; Schalock et al., 2015).

Elderly persons with mild or moderate ID, no different from ageing persons without ID, think over themes as ‘what was the meaning and sense of my life?’, ‘How did I matter to other people?, ‘What is to be expected after death, am I going to heaven?, or ‘Do I believe in God?’.  These questions match the questions all elderly need to answer, as Marcoen et al. (2006) describe in their gerontological understanding of the life task ‘Giving meaning to the naked existence’. It is less clear if elderly with severe or profound ID are affected by such themes.

Two other questions, which we will not further examine, relate to this existential theme: supporters ask themselves if their own lives were meaningful through caring for these vulnerable persons with ID; and supporters are confronted with (non-age specific) questions on the right of existence of persons with severe disabilities. We will not expand on these questions, for they are fundamentally different questions than those on existential well-being of elderly with ID.

These indicators closely relate to the domain of Emotional Wellbeing, Interpersonal Relations, Personal Development and Physical Wellbeing, as these are described in the model of Schalock. At the same time they are not to be reduced to these domains. This is confirmed by Dezutter (2014), who states that searching for and experiencing happiness does not necessarily coincide with seeking or experiencing meaning in life. She suggests to expand the bio-psycho-social model, on which the QoL model of Schalock is based, to a bio-psycho-social-existential model (Dezutter, 2017).

We want to explore if this 'Existential Wellbeing' or 'Experiencing/giving of meaning' is a separate QoL domain, rather than a sub-part of an already described domain in the model of Schalock. We will explore which indicators are specifically useful for elderly with ID, and if possible give clues as how to deal with such questions (Research Part 4).

References

Bigby, C. (2004). Ageing with a lifelong disability : a guide to practice, program and policy issues for human services professionals. London: London : Jessica Kingsley.

Buntinx, W. H. E., & Schalock, R. L. (2010). Models of Disability, Quality of Life, and Individualized Supports: Implications for Professional Practice in Intellectual Disability. Journal of Policy and Practice in Intellectual Disabilities, 7(4), 283-294.

Claes, Claudia. (2012). Ouder worden en kwaliteit van bestaan: paradox of synergie? In J. Warnez, N. Schepens, & C. Seynaeve (Eds.), Oud, niet out! : over ouderen met beperkingen en inclusie (pp. 19–34). Antwerpen, België ; Apeldoorn, Nederland: Garant.

Dezutter, J. (2014). Nastreven van geluk en zoeken naar zin. In Bormans, L. e. a. (Ed.), Veel geluk. Het grote geluksonderzoek. Tielt: Lannoo.

Dezutter, J. (2017). Het biopsychosociaal zorgmodel: een integraal model!? VIEWZ. Visie en Expertise in Welzijn en Zorg.

Fesko, S. L., Hall, A. C., Quinlan, J., & Jockell, C. (2012). Active Aging for Individuals with Intellectual Disability: Meaningful Community Participation Through Employment, Retirement, Service, and Volunteerism. American Journal on Intellectual and Developmental Disabilities, 117(6), 497-508.

Janicki, M. P., & Ansello, E. F. (2000). Community supports for aging adults with lifelong disabilities. Baltimore: Baltimore : Brookes.

Maes, B., & Petry, K. (2000). Naar een groeiende consensus over de betekenis van het concept "kwaliteit van leven"? In Ghesquière, P. J., J. M. A. M. (Ed.), Van zorg naar ondersteuning: ontwikkelingen in de begeleiding van personen met een verstandelijke handicap (Vol. Tijdschrift voor orthopedagogiek). Houten Bohn Stafleu Van Loghum.

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Schalock, R. L. (2004a). The concept of quality of life: what we know and do not know. Journal of Intellectual Disability Research, 48(Pt 3), 203-216.

Schalock, R. L. (2004b). The Concept of Quality of Life: What We Know and Do Not Know. Journal of Intellectual Disability Research, 48(3), 203-216.

Schalock, R. L., & Bonham, G. S. (2003). Measuring outcomes and managing for results. Evaluation and Program Planning, 26(3), 229-235.

Schalock, R. L., & Verdugo, A. M. A. (2002). Handbook on quality of life for human service practitioners. Washington (D.C.): Washington (D.C.) : AAMR.

Schalock, R. L., Verdugo, M. A., Gomez, L. E., & Reinders, H. S. (2015). Moving Us Toward a Theory of Individual Quality of Life. American Journal on Intellectual and Developmental Disabilities, 121(1), 1-12.

Schepens, Van Puyenbroeck & Maes (2017a). Effects of Support Strategies on Quality of Life Indicators of Elderly Persons with Intellectual Disabilities: a systematic literature review. In preparation.

Vandevyvere, I., Van Puyenbroeck, J., & Smits, D. (2010). Zorgen voor de levenskwaliteit van ouder wordende personen met een handicap: eindrapport december 2008 - juli 2010. Onderzoek in opdracht van het Vlaams Ministerie van Welzijn, Volksgezondheid en Gezin. Brussel: Brussel : Hogeschool-Universiteit Brussel.

Warnez, J., Schepens, N., & Seynaeve, C. (2012). Oud, niet out!: Over ouderen met een beperking en inclusie. Antwerpen: Antwerpen : Garant.

Wasserman, D. L. (2010). Using a systems orientation and foundational theory to enhance theory-driven human service program evaluations. Evaluation and Program Planning, 33(2), 67-80.

World Health, O. (2001). Healthy ageing - Adults with intellectual disabilities: Summative report. Journal of Applied Research in Intellectual Disabilities, 14(3), 256-275.

 www.vaph.be