Author
MCCALLION Philip; NICKLE Tara;
Individuals with developmental disabilities and their caregivers.
Journal citation/publication details
Journal of Gerontological Social Work, 50(supplement 1), 2008, pp.245-266.Summary
This review looks at psychosocial interventions for (or on behalf of) adults with developmental disabilities, designed to address the issues raised by aging. Most of the ten studies identified concern futures planning interventions for carers, while three involve developmentally disabled adults directly in equipping them to cope with age-related changes in their lives. Although the studies all provide useful, and positive, results, the evidence base is thin and further research is needed.
Context
The number of people surviving into later life with developmental disabilities such as learning disabilities or Down’s syndrome is increasing, to the point when the numbers in the USA are predicted to double by 2020. This will place a considerable potential burden on parents, siblings and other informal and professional carers. The biggest barriers to successful ageing are problem behaviours, the onset or poor management of mental health conditions, and inadequate planning for ageing. This review examines the empirical literature on interventions designed for this population.
Methods
What sources were used?
The following databases were searched: AgeLine; Ingenta; and PsycINFO. The authors also state that they searched EBSCO, a database vendor that provides access to a wide range of services, but they do not specify which of these were used. The searches identified ten review articles which were manually scanned to identify further material.
What search terms/strategies were used?
Two main sets of terms were used to produce the following strategy:
(intellectual disability OR developmental disability OR mental retardation OR Down syndrome) AND (psychosocial OR therapeutic OR intervention)
This search was run ‘with and without the word aging’.
What criteria were used to decide on which studies to include?
Eligible studies were published in the previous ten years (the cut-off date is not given but could be 2005) and focused on, or were relevant to, developmentally disabled people over 50.
Who decided on their relevance and quality?
The searches delivered ‘over 50 articles’ on interventions with adults who had developmental disabilities, mostly learning disabilities. The majority were excluded because they were conducted with younger age groups. All reviews in this issue of the Journal of Gerontological Social Work judged the quality of evidence on the basis of a common framework: meta-analysis or systematic review of all relevant randomised controlled trials (RCTs) (Level I); at least one properly designed RCT (Level II); well designed controlled but non-randomised studies (Level III); non-controlled studies (Level 4a); and consensus reviews of expert opinion based on clinical experience or reports of expert committees (Level 4b).
How many studies were included and where were they from?
Ten intervention studies were reviewed, together with three ‘consensus reports’ based on expert opinion. The intervention studies are summarised in Table 2 but geographical settings are not reported.
How were the study findings combined?
The review is narrative.
Findings of the review
Consensus reports
Of the three consensus reports or guidelines identified, one examined 92 studies of psychotherapy with learning disabled subjects and provided outcome ratings to indicate that interventions with adults achieved significant positive benefits on more than two-thirds of outcome measures. The second is described as an expert commentary on the use of cognitive-behavioural therapy (CBT) and psychodynamic psychotherapy with developmentally disabled adults. Outcomes were unclear, primarily because of the methodological weaknesses of studies. The third report is a ‘consensus guideline’ based on the work of an expert panel, which recommended the following intervention approaches as suitable for all clients with developmental disabilities: applied behaviour analysis; environmental management; and client/family education.
Primary research studies
Of the ten intervention studies identified, seven targeted futures planning, while three focused on coping with age-related change. All had strong educational components, and the former were more often targeted at family carers than directly at developmentally disabled adults.
With the exception of one controlled experimental study, the futures planning studies were of quasi-experimental or pre-/post- designs. Most were group-based educational interventions, and some also included an explicit support element. All delivered positive results in areas such as improved knowledge of, and reduced stress and anxiety about, futures planning issues and resources.
The three age-related change studies were carried out directly with developmentally disabled adults, and ‘designed to be mindful of cognitive, developmental, and speech/language deficits as well as aging associated changes.’ All delivered positive results. Two employed a psycho-educational approach to alter attitudes to dementia among four developmentally disabled adults living in a home with others who had dementia; and to help nine developmentally disabled adults come to terms with the physical losses associated with ageing. The third study used assistive technology and environmental interventions to help prepare institutionalised adults for a move to community-based living.
Authors' conclusions
‘Overall, interventions that assist DD persons cope with age-related transitions proved to be a relatively underrepresented type of research.’ The few studies identified dealt with important psychosocial issues but samples were small and few outcomes were examined. More research needs to be conducted, although the authors are aware of the difficulties posed not just by the study population itself but by the lack of trained professionals to deliver interventions. Research needs to extend beyond those with learning disabilities, and to encompass developmentally disabled adults with lower levels of communication and cognitive skills.
Studies need to be as rigorous as possible in design and conduct, but the authors recognise that randomised controlled trials may be neither possible nor appropriate: ‘it is important to welcome efforts to build evidence for practice rather than simply point out the limitations of the evidence available’ (for this reason, they recognise all the studies they cite, however small or otherwise inadequate, as contributing to the evidence base).
Implications for policy or practice
No specific implications are discussed. The paper concludes with a ‘treatment resource appendix’ directed at American social workers.