Introduction

Many countries are experiencing an aging population, and with these changing demographics, there will likely be more older people with health and functional decline.1 Globally, there were 617 million adults 65 years or older in 2015, and this number is expected to grow to 1.6 billion by 2050.2 While older adults are living longer, the burden of chronic disease and functional decline has also grown.3 There have been concerns that these demographic changes will be associated with increasing health and social care costs. Current systems to care for older people who need significant support are dominated by admissions to costly long-term residential care facilities and are not ideal for many people. Canadian estimates suggest that public long-term care spending will triple from 2014 to 2050, on top of significant increases in the private costs of long-term care.4

International leaders in healthcare and social policy have called for increased support for frail older people in the community to delay or deter admissions to costly long-term care facilities.1,5 Frail older people (i.e. those who have decreased resources to adapt to physiologic changes and who are at increased risk of adverse outcomes) are particularly likely to need support as they age. Frailty is associated with a loss of independence and need for support, as well as continual decline over time.6,7 To support this population to remain living in the community, a range of supports are needed, many of which are associated with out-of-pocket expenses for frail older people or their caregivers. In addition to the health challenges associated with frailty, individuals and their families can experience unanticipated financial burden8 that can influence decisions to move to long-term care earlier than anticipated.9 Identifying the out-of-pocket expenses associated with this population living well at home can contribute to the development of programs and community supports to ameliorate the financial burden of living in the community.10

Frailty

Over the past 20 years, frailty has been demonstrated to be an important physiologic condition that has implications for the health and quality of life of many older people.5,7,11 Generally, the term frailty is used to describe individuals with multi-system impairment that contributes to a vulnerability to poor outcomes and loss of ability to recover from illness.5,11 It has been associated with increased falls, functional decline, morbidity, mortality and increased hospitalization.12-14 Two operational definitions of frailty are common in the literature: one defines frailty based on physical components, and the other is a broader definition that includes social and psychological components.5,15,16

Reports on the prevalence of frailty among community-dwelling older people vary depending on the definition of frailty used, as well as the setting and population studied. Nonetheless, it is widely accepted that frailty is a significant issue for many older people.1,5,11 A systematic review of 21 studies reported a weighted prevalence of 10.7% for frailty in community-dwelling older people; however, the prevalence in individual studies varied considerably (4.0%-59.1%).15 The authors attributed much of this variation to multiple definitions of frailty used in the included studies. There is a need for further research to refine the operational definition of frailty.16,17 In a Canadian cohort study, using a broad definition of frailty, the prevalence of frailty was found to be 22.7% for people ages 65 to 102 years.13

Aging in place

Many older people prefer to age in place,18 that is, to remain in their homes and communities as they age.19,20 The home and community environment is important to the quality of life of frail older people, and frail individuals often prefer to stay in their homes and communities as they age and experience health and functional changes.21,22 Frail older people have complex needs, and to live well at home while experiencing health and functional changes, a number of supports may be needed, such as home modifications, assistive devices, home healthcare services, transportation accommodation, and home maintenance support.23,24

For many older people experiencing frailty, caregivers are integral to enabling them to live at home in the community. Caregivers are those who provide unpaid care and are often family members or friends. Caregivers are included in this review because it is often difficult to determine which out-of-pocket costs are paid by older people themselves and which are borne by family and friend caregivers.8

Out-of-pocket expenses

For this review, out-of-pocket expenses are defined as financial expenses incurred by older adults or family and friend caregivers to enable frail older people to live well in their homes in the community. Out-of-pocket expenses associated with aging in place include a broad array of services and supports that are directly related to medical conditions or functional impairment but are not paid or reimbursed by public healthcare systems or covered by health insurance. For example, expenses may include assistive devices or over-the-counter medications, services such as snow removal or lawn care, or essential home modifications to ensure safety when individuals experience functional decline.

While the opportunity costs of unpaid caregiving have been demonstrated in the literature,8 there has been less attention to the out-of-pocket expenses that come with aging in place. In a systematic review of literature examining the factors influencing decisions about housing, economic and financial considerations were found to be important to frail older adults' decisions about where they lived, including decisions about moving to long-term residential care.9 Many individuals need to make decisions about where to spend their money, and when they have limited funds, they may have to decide between various essential services and health-related costs.25 While there may be regional programs to help older people pay for some essential services and healthcare interventions, out-of-pocket expenses also play a role in how frail older people make decisions about their lives.

Studies exploring the impact of out-of-pocket medical expenses often focus on individuals experiencing a single health condition, such as diabetes,26 chronic obstructive pulmonary disease27 or cancer,28 but suggest that such expenses contribute to an inability to pay for essential living expenses. Out-of-pocket medical spending has been shown to increase with the number of chronic conditions present.29 For older people with frailty who have multiple health conditions that affect their functional abilities, medical and non-medical out-of-pocket expenses are a particularly important issue. Older people are often on fixed incomes, and those experiencing frailty may have few opportunities to engage in paid work.1 Significant out-of-pocket expenses combined with limited income can contribute to financial insecurity in older people.1 Financial insecurity in this population has been associated with many factors that affect individual health, such as medication non-adherence, disrupted access to health care and inability to leave unsafe environments.1,26,30,31

A 2018 systematic review of interventions to address frailty in older people included an analysis of the costs of interventions, and the cost benefit and cost savings in the review.32 In this review, the authors approached the economic analysis from the perspective of the healthcare system and society33; it did not include consideration of out-of-pocket expenses from the perspective of frail older people or caregivers. Another systematic review was conducted to compare the healthcare costs of functionally dependent older adults in the community with healthcare costs of providing care to this population in residential settings.34 The authors determined that providing health care in the community was more cost effective than residential health care.34 Again, this review was conducted from a societal perspective, and did not address the out-of-pocket expenses incurred by individuals and caregivers in the community.

A preliminary search of PROSPERO, MEDLINE, the Cochrane Database of Systematic Reviews and the JBI Database of Systematic Reviews and Implementation Reports was conducted, and no planned or underway systematic reviews examining the out-of-pocket expenses needed to support frail older people in the community were identified. Two completed reviews examining costs related to older people with health and functional impairment were found and have been described above.32,34 A third review explored the economic costs associated with caregiving, and included findings related to out-of-pocket expenses.8 This scoping review, however, was focused on caregivers of adults and did not discuss the unique experiences of caregivers of frail older people or include information on the out-of-pocket expenses incurred by frail older people themselves.

The objective of this scoping review is to describe the available evidence reporting out-of-pocket expenses for aging in place for frail older people and their caregivers. A scoping review is the best method to review this body of literature because frailty has only recently become a focus of academic inquiry, and the literature that exists originates from a range of disciplinary perspectives. The scoping review will be conducted to determine the size and scope of the body of literature on this topic, with the aim of identifying what research exists as well as the gaps in the literature.19 We will identify and extract key concepts from the literature and categorize the existing evidence.19

Review question

What does the literature report about the out-of-pocket expenses associated with aging in place for frail older people and their family and friend caregivers?

Inclusion criteria

Participants

This scoping review will consider all studies and policy papers that include frail older people living in community settings. Studies that include participants aged 60 years and older who have been identified as frail and their caregivers will be included. Because there has been debate in the literature about the best operational definition of frailty, we will note the definitions and measures used to identify frail older people, as well as the definition of caregiver. We will include a discussion of these definitions in our findings.

Concept

This review will consider studies that report on the financial out-of-pocket expenses incurred by frail older people or their family and friend caregivers to live well at home.

Context

This review will consider studies that focus on older people who live in the community and will exclude studies in long-term residential care or assisted-living facilities. Studies conducted in all countries will be included, and the jurisdiction where the studies were conducted will be included in data extraction and presentation of findings.

Types of studies

For this scoping review, we will include original research and policy papers that investigate costs from the frail older adults' or caregivers' perspectives. This review will consider quantitative and qualitative studies and policy papers.

Due to limited resources, only literature published in English or French will be considered for inclusion in this review. To include all relevant literature, studies published from inception of the databases to completion of the review will be included.

Methods

The proposed systematic review will be conducted in accordance with the JBI methodology for scoping reviews.35

Search strategy

The search strategy aims to find both published and unpublished literature (e.g. policy papers, theses and dissertations). A three-step search strategy will be used in this review. An initial limited search of MEDLINE, CINAHL and Embase will be undertaken, followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference lists of the literature included in the review will be hand searched for additional studies. A sample search strategy is presented in Appendix I.

Information sources

The databases to be searched for published literature include CINAHL, PubMed, Scopus, Embase, PsycINFO, Sociological Abstracts and Public Affairs Index.

The search for unpublished studies will include Agency for Healthcare Research and Quality, Alzheimer's Association: Alzheimer's Disease and Dementia (United States), Alzheimer Society of Canada, Alzheimer's Society (United Kingdom), American Nurses Association, Canadian Nurses Association, Centre for Health Evidence, conference proceedings, digital dissertations, DiVA (dissertations and other publications in full text from Nordic Universities), EPPI-Centre, Google Scholar, GrayLIT Network, Grey Literature Bulletin (North West Health Library and Information Services, Liverpool, UK), Grey Source: A Selection of Web-based Resources in Grey Literature, Index to Theses Institute for Health and Social Care Research, National Information Center on Health Services Research and Health Care Technology, National Library of Medicine, Netting the Evidence, Networked Digital Library of Theses and Dissertations, New York Academy of Medicine Grey Literature Report, NLM Gateway, PolicyHub, primary care clinical practice guidelines, ProQuest Dissertations and Theses Databases, PsycExtra, Public Health Agency of Canada, SIGLE (System for Information on Grey Literature in Europe) and TRIP (Turning Research into Practice).

Study selection

After the search is completed, all citations will be uploaded to Covidence systematic review software (Covidence, Melbourne, Australia), and duplicates will be removed. Two reviewers will review the title and abstract of each citation and select studies that meet the inclusion criteria specified in this protocol. The studies identified through the title and abstract review will be uploaded in full and added to Covidence. These studies will then be reviewed by two reviewers to determine their inclusion based on the study inclusion criteria. Any disagreements between the two independent reviewers at each stage of the review will be solved by consensus or by the decision of a third reviewer. Details for the reasons for exclusion will be noted and included as an appendix in the final report. The results of the search will be reported in full in the final report and presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram.36 Quality appraisal of selected studies will not be conducted, as is the standard procedure for scoping reviews, which aim to provide an overview of the literature.35

Data extraction

Data will be extracted from papers included in the scoping review by two independent reviewers using a data extraction tool developed by the reviewers, following the JBI scoping review methodology.35 Data extraction will be guided by the research question and objective. A table of key elements of the literature will be used to chart the data (a draft data extraction table is presented in Appendix II). The table includes categories related to the type of literature, methods used, setting and out-of-pocket expenses (including interventions, comparison, and outcomes, when appropriate). The table will be refined throughout the review process, and a discussion of changes to the table will be included in the presentation of results. Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer. Authors of papers will be contacted to request missing or additional data, where required.

Data presentation

Results will be reported graphically with tables when possible. Tables will be developed and refined throughout the data extraction to reflect the purpose and objective of the review. Specifically, results will be categorized by literature type (i.e. research study or policy paper), the design used in research studies and geographical location. A narrative will accompany the result tables and will describe the characteristics of the body of literature related to the out-of-pocket expenses for aging in place, and identify any gaps in the literature. The results will be classified under the following categories: year of publication, country, purpose, definition of frailty used, intervention information and key findings related to expenses.

Funding

EM has received stipend funding from the Canadian Frailty Network.

Appendix I: Search strategy for CINAHL

Appendix II: Proposed data extraction form

References