Support care needs of people with hearing and vision impairment in dementia: a European cross-national perspective.

PURPOSE

Aging-related sensory impairments are among the most common and disabling comorbidities in people with dementia (PwD). This study explored the unmet support care needs (SCNs) from the perspectives of people with hearing and/or vision impairment in dementia (PwD), and their care partners in Europe.

METHODS

This was a two-phase mixed methods study. We administered standardized questionnaires of SCNs and quality of life (QoL) to PwD with hearing and/or vision impairment ( = 97), and their care partners ( = 97) in the UK, France, and Cyprus. Next, a purposive sub-sample of 34 participants (PwD and care partners) participated as focus groups (FGs) or semi-structured interviews to explore their SCNs in depth.

RESULTS

Over 94% of the participants reported unmet SCNs (median, 13 (range 5-23)). Nearly three-quarters reported SCNs in the moderate to high range, with the most prevalent unmet SCNs for PwD being in the psychological (>60%) and physical domains (>56%), followed by the need for health information (>46%). Emergent qualitative themes were: (1) the need for tailored support care interventions; (2) care burden, social isolation, and loneliness arising from the combined problems; (3) the need for adequate support from professionals from the different fields, including education around the use of sensory aids. Both study phases revealed that SCNs were highly individualized.

CONCLUSIONS

This cross-national study revealed that PwD with sensory impairment and their care partners experience a wide range of unmet SCNs, the interactions between sensory impairments, SCNs and QoL are also complex. A tailored intervention could address these unmet SCNs, including additional support with sensory aids, psychological support, more information about concurrent impairments, and joined up health systems providing care.Implications for rehabilitationA majority of participants with combined age-related hearing, vision, and cognitive impairment had unmet SCNs.The needs of care partners including the risk of loneliness and social isolation, need to be considered.Individually tailored, specific interventions for hearing, vision, and cognitive impairment should incorporate physical and psychological support, as well as education.