Quality of life measurement tools for people with dementia and intellectual disabilities: A systematic review.

BACKGROUND: Adults with intellectual disabilities are an at-risk group of developing dementia. In the absence of a cure for dementia, emphasis on treatment is the promotion of Quality of life (QoL). The aim of this review is to identify and describe QoL tools for people with intellectual disabilities and dementia. METHOD: A systematic review was carried out using 10 databases and papers from up to March year 2021. RESULTS: Two instruments were identified and examined. The QoL in late-stage dementia, which showed evidence of good levels of internal consistency, intra-rater reliability, test-retest reliability, and convergent validity. The Dementia Quality of Life - proxy was also used; however, its psychometric properties have yet to be studied within the intellectual disabilities population. CONCLUSION: It is recommended instruments should be developed and psychometrically tested specifically for adults with intellectual disabilities and dementia to help inform policy makers, measure outcomes of interventions and personal outcomes.

Individual cognitive stimulation therapy (iCST) for people with intellectual disability and dementia: a feasibility randomised controlled trial.

OBJECTIVES: To examine the feasibility, acceptability and fidelity of individual Cognitive Stimulation Therapy (iCST) in people with intellectual disability (ID) and dementia. METHOD: We aimed to recruit forty dyads (carer and individual with dementia and ID) who were randomised to iCST or a waiting list control group. Both groups received treatment as usual. Family and paid carers delivered the manualised intervention (40 sessions over 20 weeks). Recruitment and retention of participants, intervention adherence, fidelity and acceptability were assessed. Outcome measures of cognition, adaptive functioning, quality of life (QoL) and carer outcomes were collected at baseline, midpoint (11 weeks) and at 21 weeks. Qualitative interviews were conducted with six carers about their experience of iCST. RESULTS: Forty dyads were recruited over 10 months from 12 National Health Service trusts. One dyad dropped out and 87.5% and 97.5% completed the midpoint and end-point assessments respectively. Assessment of fidelity indicated that the correct session structure was not followed; 70% completed at least 20 sessions and there was a high level of satisfaction with iCST. QoL was significantly higher in the iCST arm at 21 weeks (adjusted mean difference: 3.11; 95% CI: 0.64 to 5.58). There were no differences in the other outcome measures. CONCLUSION: The intervention was feasible and acceptable. A full-scale trial is warranted but some modifications are needed, including improved training and supervision for carers to improve fidelity.

Co-creating Humanistic AI AgeTech to Support Dynamic Care Ecosystems: A Preliminary Guiding Model.

As society rapidly digitizes, successful aging necessitates using technology for health and social care and social engagement. Technologies aimed to support older adults (e.g., smart homes, assistive robots, wheelchairs) are increasingly applying artificial intelligence (AI), and thereby creating ethical challenges to technology development and use. The international debate on AI ethics focuses on implications to society (e.g., bias, equity) and to individuals (e.g., privacy, consent). The relational nature of care, however, warrants a humanistic lens to examine how "AI AgeTech" will shape, and be shaped by, social networks or care ecosystems in terms of their care actors (i.e., older adults, care partners, service providers); inter-actor relations (e.g., care decision-making) and relationships (e.g., social, professional); and evolving care arrangements. For instance, if an older adult's reduced functioning leads actors to renegotiate their risk tolerances and care routines, smart homes or robots become more than tools that actors configure; they become semi-autonomous actors, in themselves, with the potential to influence functioning and interpersonal relationships. As an experientially-diverse, transdisciplinary working group of older adults, care partners, researchers, clinicians, and entrepreneurs, we co-constructed intersectional care experiences, to guide technology research, development, and use. Our synthesis contributes a preliminary guiding model for AI AgeTech innovation that delineates humanistic attributes, values, and design orientations, and captures the ethical, sociological, and technological nuances of dynamic care ecosystems. Our visual probes and recommended tools and techniques offer researchers, developers/innovators, and care actors concrete ways of using this model to promote successful aging in AI-enabled futures.

Possible uses of computer modeling of the functioning human hand.

This article includes a brief description of an approach to functional limb modeling including a summary of "helping hand," a computer model created by the authors. Potential uses of three-dimensional computer modeling of hand function are presented with some illustrations relevant to clinicians.