This study builds on the well-established link between loneliness and adverse physical and mental health outcomes to examine how older adults a high-risk population, are adequately assessed for services needed to address isolation. This study offers prevention-oriented insights from a first-ever systematic empirical case of the actual written case records by a large homecare agency tasked with documenting, authorizing and planning services to older adults with probable CI. The analyses revealed a puzzling lack of a consistent relationship between documented needs and authorization or assignment of services to address the needs. While admittedly a first step using a small sample, findings can inform agencies and planners about critical questions to examine further and potential targets for prevention. The findings can also contribute to developing best practices and areas for intervention to improve service delivery that reduces isolation and loneliness among older persons.
Comparison with other findings is difficult due to the relative absence of similar studies. While existing studies provides evidence about the importance of social participation for health in older adults [e.g., 5, 6, 7, 26], no previous studies reported ways in which need assessments currently document (or should document) social participation among homecare clients with cognitive impairment [CI]. This study found that information is commonly described only in very basic terms. Social networks or social participation limitations are rarely verified. Documented best practices and standards exist in other care-related disciplines (e.g.,
emcdda.europa.eu/best-practice/guidelines). And various laws are in place to ensure care quality (e.g.,
nahc.org and
socialstyrelsen.se). So with these and other means of backing and legal support, it behooves all stakeholders – from policy makers to homecare agency employees – to strive for development of standards for communicating, delivering, and enabling social participation opportunities for clients with CI.
Types of homecare services with social participation focus. Studies describing
types of homecare services focused on social participation for persons with CI are currently absent in the literature. In this study, homecare services that
had a social focus were documented, but the data contained no concise, consistent descriptions that clearly communicated who are eligible for social participation opportunities and activities. In addition, social participation services were
not specified for all clients, (e.g., daycare center visits). Local, state, national, and international stakeholders often work together to define, describe, and implement state-of-the-art solutions, which in turn, enable validated global solutions regarding problems that all countries share (e.g., cutting costs and improving quality). An example of a multilingual (international) effort is
the EQ-5D, which measures mobility, self-care, usual activities, pain/discomfort, and anxiety/depression (
euroqol.org/) [
45]. However, no standardized measures for social participation seem available that are suited to need assessors. Perhaps a similar effort should occur regarding public and private sector homecare services that account for the social needs of persons with CI.
Social participation groups and eligibility for homecare service with social focus
Several publications contain profiles of homecare clients [
46‐
49]. None of these profiles described social participation capabilities among homecare clients with CI. This study categorized homecare clients as having
no limitations,
potential limitations, and
marked limitations regarding social participation. It is thought important to highlight that in this study we interpreted documented limitations in social participation as a
need, this is in line with the reasoning in other homecare service areas e.g., cleaning, showering etc.
Scourfield [
50] reported that little evidence was found that older persons played a significant role in their own eligibility assessment process. Harrison et al. [
51] found that social participation, such as maintaining relationships and socializing, were among the most unmet needs in homecare. Harrison et al. [
51] suggested that this phenomenon was due to lack of recognition, lack of knowledge, or other prioritization of needs. Lipsky [
52] described a dilemma in which employees’ intentions are to help persons or to make decisions about each individual – but the structure of their job makes it impossible, which results in stereotyping and categorizing of the client group. Patmore [
53] and Wilson [
54] described programs that provided support for maintaining social participation, and this information provides insights into tools and procedures that can be successful.
This study found that the relationship between documented social participation limitations and eligibility for services was ambiguous, and no consistent relationships were found between documented social participation limitations and authorization of services. In addition, it found that clients – authorized for socially focused homecare services – were equally as often clients with no identified limitations – compared to clients with marked limitations. And many in the marked limitations group did not receive homecare services with a social focus. While this study’s limited sample and the cross-sectional character of the data (only one single time for data collection) requires caution in drawing generalizations, we can certainly conclude that several questions should be raised in light of the findings. For example, how can need assessors more accurately and consistently determine eligibility for services with a social participation focus? How can homecare service planners better describe, develop, and enable services with a social participation focus? How can assessors and planners best align clients’ capability/constraint profile with social participation opportunities and activities – and thus fulfill clients’ needs?
During data analysis, decision-support for authorization of services that addressed social participation was difficult to interpret and the reader needs to be aware of this when interpreting the results. This aspect of homecare service, i.e., what is, or is not, authorized by the need assessor, is relatively neglected in research; although recognition is increasing. To the best of our knowledge, this study is the first to examine need assessment forms directly and the care plans related to homecare clients with cognitive impairment – to determine how and in what way social participation, loneliness, and isolation are specified on the forms.
Homecare services aim to support a reasonable quality of life for older persons living in their own housing. Having unmet needs has been demonstrated to decrease health status for older persons – with increased stress and loneliness as results [
55]. This study documented unmet social needs and inconsistency in identifying social needs despite existing national policy and local agencies who evaluate and authorize provision of home-based social participation [
35]. Today, despite wide recognition of the high risks for health and mental health harms from inadequate social participation, particularly in later life [
20‐
23] the social needs within the group of older persons with CI living at home with homecare services remains little known. The magnitude of the problem is evidenced by national surveys and population-based studies in Sweden which show that loneliness among older people is a common problem. Around 70% report loneliness among people with dementia [
56] and between 45 and 55% when living at home with support from homecare services [
57,
58]. Nevertheless, homecare service to support social activities such as a daycare center are granted to relatively few [
59]. In this study [
59], based on a large data set from Sweden, they conclude that it is possible that the need for homecare services may remain unmet in people with dementia.
A strength here is the naturalistic study of actual agency records. However, data was not available on service delivery outcomes, and such an assessment is a logical next step. Given this study’s small sample from just one homecare agency, the aforementioned issues certainly need to be further explored – perhaps by adding direct observations or interviewing clients and staff members affiliated with public and private homecare agencies.