Research protocol for a complex intervention to support hearing and vision function to improve the lives of people with dementia

Abstract

BackgroundHearing and vision impairments are among the most common and disabling comorbidities in people living with dementia. Intervening to improve sensory function could be a means by which the lives of people living with dementia may be improved. However, very few studies have tried to ameliorate outcomes in dementia by improving sensory function. This paper describes the multi-step development of a new intervention designed to support hearing and vision function in people living with dementia in their own homes. At the end of the development programme, it is anticipated that a ‘sensory support’ package will be ready for testing in a full scale randomised controlled trial.MethodsThis programme is based on the process of ‘intervention mapping’ and comprises four integrated steps, designed to address the following: (1) scoping the gaps in understanding, awareness and service provision for the hearing and/or vision impairment care needs of people with dementia using a systematic literature review and Expert Reference Group; (2) investigating the support care needs through a literature search, stakeholder surveys, focus groups, semi-structured interviews and an Expert Reference Group, leading to a prototype sensory support package; (3) refining the prototype by additional input from stakeholders using focus groups and semi-structured interviews; and (4) field testing the draft intervention using an open-labelled, non-randomised feasibility study, integrating feedback from people with dementia and their significant others to develop the final intervention ready for full scale definitive trialling. Input from the ‘patient and public voice’ is a cornerstone of the work and will interlink with each step of the development process. The programme will take place in study centres in Manchester, Nicosia and Bordeaux.DiscussionQuantitative and qualitative data analyses will be employed, dependent upon the sub-studies in question. Data from the steps will be integrated with consideration given to weighting of evidence for each step of the programme. This programme represents the logical development of a complex intervention to fulfil an unmet need. It is based on a theoretical framework and will lead to a subsequent full scale efficacy trial. The challenges in integrating the data and addressing the contextual issues across study sites will be scrutinised.

Impact of an intervention to support hearing and vision in dementia: The SENSE‐Cog Field Trial

“…Hearing and vision impairments are more common in people with dementia (PwD) than in those who are cognitively healthy . Such impairments negatively affect a range of dementia‐related outcomes, including quality of life (QoL), behaviour, and cognition, as well as imposing an added burden on health, social, and informal care . There is some evidence that correcting vision and hearing impairments with glasses and hearing aids, respectively, may improve outcomes, but in PwD, adherence is often low .…”

“…Thus, correcting the sensory impairment alone may be insufficient and multifaceted interventions, including adherence support and communication training, may be needed. To address this, we developed a “sensory intervention” (SI) comprising assessment and management of sensory deficits, support with adherence and maintenance of devices, communication training, sensory enhancement of the home environment, and signposting to additional support services …”

“…According to this model, key areas to be addressed to effect behavioural change (“B”) include capability (“C”) or the individual's psychological and physical capacity to engage in the activity concerned; opportunity (“O”) or all the factors that lie outside the individual that make the living better with dementia possible; and motivation (“M”) or the brain processes that direct goals and decision making. Each component of the SI corresponded with one or more of the COM‐B elements, as outlined in detail previously …”

“Losing my glasses…losing my mind”: Perspectives on sensory impairment, loneliness, social isolation and dementia

“…This represents a micro‐level intervention directed at individuals. Developed through an intervention mapping program with international stakeholders, the intervention involves assessment and remediation of hearing and vision impairments (i.e with hearing aids, glasses, and personal listening devices). Additionally, an essential component of the intervention is involvement from a “sensory support therapist” (SST) for adherence, device management, sensory optimisation of the home environment, and communication training with care partners.…”

Feasibility of an Intervention to Support Hearing and Vision in Dementia: The SENSE‐Cog Field Trial

“…In contrast, an intervention targeting the wider issue of sensory impairment and adherence with corrective devices may have a role. To address this, we iteratively developed a multifaceted sensory intervention (SI) that includes assessment and management of hearing and vision deficits and additional support to aid adoption of the corrective devices into everyday life as well other components to support sensory function …”