https://orcid.org/0000-0003-1822-3643
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Abstract
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 (n = 97), and their care partners (n = 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.
A 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.
Implications for rehabilitation
Correction Statement
This article has been corrected with minor changes. These changes do not impact the academic content of the article.
Acknowledgements
Permission to use and adapt the SCNS for the purposes of our study was generously given by Professor Afaf Girgis, Director of the Psycho-oncology Research Group, Centre for Oncology Education and Research Translation (CONCERT), Ingham Institute for Applied Medical Research South Western Sydney Clinical School, UNSW Medicine. The authors would like to thank all the researchers at the University of Manchester, European University of Cyprus and the University of Bordeaux for conducting and transcribing the interviews. We would also like to thank researchers A Pye and R Bedford (University of Manchester), R Villeneuve, and C Helmer (University of Bordeaux) for contributing to data collection.
Author contributions
IL is the programme lead and conceptualized, designed and led the overall study. LW and IH conceptualized and led the qualitative part of the study. ZS and APC, and MP are research assistants. MH provided statistical input for the study. JM led the Research User Group work. CT, FOC, and RD oversaw study delivery in their sites.PD is the programme co-lead. IL, AMY, LW, WY and ZS took primary responsibility for writing the paper; all authors were involved in critical revision of the article.
Disclosure statement
No potential conflict of interest to be reported.