While looking for something to discuss at a journal club in work, I came across an interesting paper about individualised supports for people with intellectual disability (ID) and dementia. Over the last 50 years, life expectancy has increased substantially in people with ID. Compared to the general population, this cohort has a higher prevalence and earlier onset of dementia. A systematic review found that psychosocial interventions for people with dementia have rarely been implemented with those with both dementia and ID.
This study by Watchman et al. included five co-researchers with ID who were involved from the initial grant application onwards. The team sampled participants from multiple settings (living alone with some outreach support, group homes for PwID, and generic care home). For the psychosocial interventions, a resource called Jenny's diary was used as a starting point to discuss possible intervention components (e.g. design changes to home, reminiscence), so participants could select intervention activities that appealed to them as an individual.
The researchers used a bespoke measure of studying effects of intervention on behaviour (examining observed behaviour, “observed mood”, body language and verbal communication), to capture this “in the moment”, as well as assessing quality of life with a more standardised measure. They also conducted semi-structured interviews with social care staff, as well as generating data with PwID and dementia, using photovoice (a participatory research method which involves the use of photographs to convey the meaning of different lived experiences).
Participants had between two and six interventions, and most interventions showed “in the moment” positive effects. Nearly three-quarters of interventions were described as having met or exceeded their goals. The results less clear for quality of life scores, which fell at mid-point before increasing.
From the semi-structured interviews, social care staff described interventions positively, that they ”brought them (the participants) back”. Key themes were: enabling care (allowing participants to have choice about what interventions were being used, having one-on-one time with staff), interventions for practice (a key point here was a change in perception from seeing interventions as adding to work burden to viewing them as timesavers overall, e.g. by reducing agitation).
From the photovoice images, key themes included the importance of friendship, involvement in future planning (photos included images from Jenny’s diary), and fear of dementia (with an associated fear of return to institutional care/change in living situation).
I thought this paper was interesting, with a wide range of measures and methods to gain a greater understanding of interventions for people with ID and dementia. The use of in-the-moment assessment can overcome difficulties in displaying effects of interventions with retrospective (even recent retrospective) measures.
I wondered to what extent photovoice was a reproduction of materials presented to participants (e.g. Jenny’s voice appeared as an image). However, it may be worth comparing with extent to which participants from the general population can bring truly novel ideas when guided through semi-structured interviews etc.