People living alone with neurodegenerative conditions: a scoping review protocol

Introduction

People living alone with neurodegenerative conditions face unique difficulties in maintaining independence and accessing appropriate health and social care support. Consolidating current understanding regarding these unique difficulties would better inform health and social care services and enable more tailored and appropriate service delivery. The proposed scoping review will summarise evidence from studies that provide evidence about people with dementia, Parkinson’s disease, Huntington’s disease, or motor neurone disease who live alone.

Methods and Analysis

This scoping review protocol uses well-established methodology outlined by the Preferred Reporting Items for Systematic review and Meta-Analysis and the Joanna Briggs Institute. Relevant publications will be searched using PubMed, Web of Science Core Collection, CINAHL and AgeLine via EBSCOhost, and EMBASE, PsycInfo, and Social Policy and Practice via Ovid. Grey literature will be searched via Google looking specifically for pdf documents. No date restrictions will be applied to the searches. For research publications a two-stage screening approach will be undertaken. The first stage will involve screening titles and abstracts for relevant literature on people with neurodegenerative conditions living alone in the community. The second stage will involve full text screening of selected articles. For grey literature the first 20 pdfs per website identified in Google will be downloaded and screened. Summary data will be extracted from publications selected for inclusion. Data synthesis will involve tabulating study characteristics and findings and preparing narrative summaries to identify commonalities, gaps, and areas for future research.

Ethics and Dissemination

Ethical approval is not required for this review. Consultation with people with lived experience, stakeholders and experts linked with the National Institute for Health and Care Research (NIHR) Policy Research Unit in Dementia and Neurodegeneration University of Exeter (DeNPRU Exeter), will help to ensure the relevance and applicability of findings. Dissemination will include a policy report and a peer-reviewed publication aimed at informing policy, practice, and improving support services for people living alone with neurodegenerative conditions.

Article Summary

Strengths and limitations of this study

• The use of a rigorous and well-established methodological framework will enhance the quality and structure of the review.

• A comprehensive search will be conducted in 7 databases will maximise identification of all possible records that meet the inclusion criteria of the review.

• The inclusion of grey literature will complement the research literature by providing detail about guidance being given to people living with and people caring for neurodegenerative conditions.

• A limitation is that the literature search will be restricted to articles published in English. This increases the risk that relevant information will be missed.