Involvement of informal and formal service providers: meeting the home care needs of older adults with severe functional impairments

This study examines informal and formal service providers' involvement in each activity of daily living (ADL) of older adults with severe functional impairments and the older adults' unmet needs for ADL assistance. In addition, this study examines the relationship between the involvement of informal and formal service providers and unmet needs for ADL assistance. Using the data from the 1999 National Long- Term Care Survey, the study included 275 older adults, who experienced ADL impairments and received assistance. This study found that nearly a quarter of the older adults reported unmet needs for ADL assistance. This study also found that the involvement of informal and formal service providers was not significantly related to unmet needs. However, the factors, including the older adult's functional status, levels of assistance received, and Medicaid enrollment, were significantly related to unmet needs included. Practice implications from these study findings for home care service providers are discussed.     

Health Care Utilization and Unmet Needs in Chinese Older Adults With Multimorbidity and Functional Impairment

ObjectivesChina has the world's largest aging population, of which 46% have multimorbidity and 38% have functional impairment. Older adults with multimorbidity often suffer functional impairment as well; however, it is not clear how current health care services have been used in this population. This study aimed to compare health care utilization among Chinese older adults at different levels of chronic disease and functional impairment.DesignA cross-sectional design. Multivariate 2-part models were used to examine the probability and frequency of health care utilization.Setting and ParticipantsData were from 5166 adults aged 65 or older from the 2015 wave of the China Health and Retirement Longitudinal Study. The sample included 22% without any chronic condition, 27% with 1 chronic condition, 44% with multimorbidity, and 7% with multimorbidity and functional impairment.MeasuresHealth care utilization included outpatient visits, inpatient visits, and unmet hospitalization needs.ResultsAs the number of chronic conditions and functional impairments increased, older adults tend to access health care more. Older adults with both multimorbidity and functional impairment tend to use health care services most, but still reported the highest level of unmet hospitalization needs among all groups.Conclusions and ImplicationsChinese older adults with multimorbidity and functional impairment may have experienced multiple barriers in accessing health care. Social programs should be created to make health care more accessible among older adults. The health care delivery system could be oriented to home-based medical care, which have been found effective in delivering high-quality care and reducing health care costs.     

Disability and Care Needs Among Older Americans

Context

The cost of late-life dependency is projected to grow rapidly as the number of older adults in the United States increases in the coming decades. To provide a context for framing relevant policy discussions, we investigated activity limitations and assistance, care resources, and unmet need for a national sample of older adults.

Methods

We analyzed the 2011 National Health and Aging Trends Study, a new national panel study of more than 8,000 Medicare enrollees.

Findings

Nearly one-half of older adults, or 18 million people, had difficulty or received help in the last month with daily activities. Altogether, 1 in 4 older adults receiving help lived in either a supportive care (15%) or a nursing home (10%) setting. Nearly 3 million received assistance with 3 or more self-care or mobility activities in settings other than nursing homes, and a disproportionate share of persons at this level had low incomes. Nearly all older adults in settings other than nursing homes had at least 1 potential informal care network member (family or household member or close friend), and the average number of network members was 4. Levels of informal assistance, primarily from family caregivers, were substantial for older adults receiving help in the community (164 hours/month) and living in supportive care settings (50 hours/month). Nearly all of those getting help received informal care, and about 3 in 10 received paid care. Of those who had difficulty or received help in settings other than nursing homes, 32% had an adverse consequence in the last month related to an unmet need; for community residents with a paid caregiver, the figure was nearly 60%.

Conclusions

The older population—especially those with few economic resources—has substantial late-life care needs. Policies to improve long-term services and supports and reduce unmet need could benefit both older adults and those who care for them.     

Dependence and necessities of non-covered services for the elderly in a health sector of Zaragoza

BACKGROUND: Dependency to carry out the activities of daily living (ADL) and home care needs of older adults depend upon factors which are not well understood. Caregiving is mainly provided by the family. The aim of this study is to estimate the prevalence of ADL dependence and associated factors among older adults and to identify associated factors with unmet home care needs in people over age 75 in Zaragoza (Spain). METHOD: A cross-sectional study was conducted on a representative sample of the community dwelling population over age, 75 in one Health Care District in Saragossa in 1998 (n = 351). Data were collected during a personal interview. ADL dependency was assessed by the Katz index. Home care needs were assessed using prevalent norms for desired frequency of care. Sources of informal care, socio-demographic characteristics, self-rated health and depression (Yesavage Geriatric Depression Scale) were considered independent variables. Logistic regression was used to identify factors associated with both ADL dependency and unmet home care needs. RESULTS: Prevalence of ADL dependence is 37.3%. The variables predicting ADL dependence are the perception of poor health, depression, being a female and being over 85 years of age. The prevalence of unmet care needs among ADL dependent individuals is 22.1%. Sources of help are limited to the families. Being a woman and living alone are the stronger risk factors for unmet needs. CONCLUSIONS: A high percentage of older adults are dependent. Informal support is insufficient and confined to the family. The social and health care system in Spain should provide to the family, emotional, financial and social support and special care for disabled people living alone and with limited material resources.     

Modeling caregivers' perceptions of children's need for formal care: physical function, intellectual disability, and behavior

BackgroundLike most caregivers, informal caregivers for children (typically parents) with special needs supply the majority of the care provided. Formal care is sometimes needed to supplement informal caregivers' efforts. For those interested in children with special needs, there is a paucity of research on those factors affecting the amount of formal care that caregivers' request.Objectives/HypothesesThis research investigates factors affecting the amount of Medicaid personal care services (PCS) requested by primary caregivers for children with special needs. The research focuses especially on the roles played by the child's functional status, intellectual abilities, and behaviors in determining the level of assistance requested by caregivers.MethodsThe data used in this research are cross-sectional information on 262 children with special needs who were Medicaid recipients in a single southwestern state. These data were collected in 2007 by master's trained social workers or registered nurses using a standardized assessment instrument.ResultsThe results indicate that a child's ability to independently perform activities of daily living (ADLs) tasks plays the major role in determining caregivers' perceptions of the need for PCS. The severity of a child's intellectual disability, like some other factors investigated, has an effect on caregivers' perceptions, but it is an indirect effect that operates through the level of the child's ADL impairment. A child's age and behaviors have direct effects on caregivers' perceptions of need, as does the presence of barriers to the caregiver providing care.DiscussionMuch of the research on children with special needs has emphasized the importance of the child's medical or behavioral diagnoses. Little attention has been given to modeling caregivers' perceptions of children's needs. This analysis of caregivers' requests for formal PCS brings to the forefront the role of ADL or functional status in this process. Many factors that one would expect to directly affect caregivers' perceptions of need, instead, have indirect effects filtered through their impact on the child's functional status.     

Creating opportunities for patient participation in managing medications across transitions of care through formal and informal modes of communication

BackgroundCommunicating about medications across transitions of care is important in older patients who frequently move between health care settings. While there is increasing interest in understanding patient communication across transitions of care, little is known about older patients'' involvement in formal and informal modes of communication regarding managing medications.ObjectiveThe aim of this paper was to explore how older patients participated in managing their medications across transitions of care through formal and informal modes of communication.MethodsThe study was conducted across two metropolitan hospitals: an acute hospital and a geriatric rehabilitation hospital in metropolitan Melbourne, Australia. A focused ethnographic design was used involving semi‐structured interviews (n = 50), observations (203 h) and individual interviews or focus groups (n = 25). Following thematic analysis, data were analysed using Fairclough''s Critical Discourse Analysis.ResultsData analysis revealed two major discursive practices, which comprised of an interplay between formal and informal communication and environmental influences on formal and informal communication. Self‐created patient notes were used by older patients to initiate informal discussion with health professionals about medication decisions, which challenged traditional unequal power relations between health professionals and patients. Formal prompts on electronic medication administration records facilitated the continuous information discourse about patients'' medications across transitions of care and encouraged health professionals to seek out older patients'' preferences through informal bedside interactions. Environmental influences on communication comprised health professionals'' physical movements across private and public spaces in the ward, their distance from older patients at the bedside and utilization of the computer systems during patient encounters.ConclusionOlder patients'' self‐created medication notes enabled them to take on a more active role in formal and informal medication communication across transitions of care. Older patients and family members did not have continuous access to information about medication changes during their hospital stay and systems often failed to address older patients'' key concerns about their medications, which hindered their active involvement in formal and informal communication.Patient or Public ContributionOlder adults, family members and health professionals volunteered to be interviewed and observed.     

Perceptions of biopsychosocial services needs among older adults with severe mental illness: met and unmet needs

This study sought to identify the psychiatric, physical, and social services needs experienced by older adults with severe mental illness (SMI) and to examine factors influencing their experience of need and service provision adequacy. Seventy-five older adults with SMI were recruited from a community mental health center to participate in the study. The typical client experienced a need for care in 10 areas, with the greatest needs occurring in the areas of psychological pain, physical illness, social contacts, looking after the home, and daily activities. The total number of unmet needs ranged from zero to 10, with the typical client having an average of 2.3 unmet needs (SD = 2.4). The highest proportions of unmet needs were in the areas of social contact, benefits, sight or hearing difficulties, and intimate relationships. Linear hierarchical regression analyses revealed that clients with lower income, greater impairments in independent daily living skills, and higher levels of depression experienced increased needs for care. Older clients who lived in private homes or apartments had higher levels of depression, and those who required assistance in the areas of intimate relationships and benefits experienced higher levels of unmet needs. Research and practice implications are discussed.     

The influence of personal care and assistive devices on the measurement of disability

The goal of all long-term care arrangements is to reduce the disabling effects of physical impairments and functional limitations. However, the means with which individuals cope with disability may not be equivalent and these differences may influence self-reports of disability in surveys. This paper examines assistive devices and personal care as factors in the measurement of disability among persons aged 70 and older in the community using the 1994 Survey of Asset and Health Dynamics of the Oldest Old (AHEAD) in the US. The use of assistive technology differs from personal care on a fundamental level. It does not require the ongoing cooperation or coordination of other people and therefore increases the sense of independence with which a disabled individual can meet their long-term care needs. Results indicate that older individuals can expect to spend most of their remaining years in good functional health, but up to two-thirds of disabled years will be spent with unmet ADL needs. Among those who are disabled, those who use only equipment and no personal care report less residual difficulty with mobility than those who use personal assistance (either alone or in combination with equipment) but the use of equipment alone is most effective for those with the least severe limitations.     

Supporting the involvement of older adults with complex needs in evaluation of outcomes in long‐term care at home programmes

BackgroundIt is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs.AimThis study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care‐related quality of life.MethodWe used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed.ResultsWe started with the standard ASCOT questionnaire to assess the care‐related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met.ConclusionThere is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long‐term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person‐centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users.Patient or Public ContributionService users with dementia were involved in the design of the ‘Easy Read’ questionnaire used in the study.     

Individuals with Stroke Reporting Unmet Need for Occupational Therapy Following Discharge from Hospital

ABSTRACT

The purpose of this study was to identify the characteristics and needs of individuals with stroke who report an unmet need for occupational therapy following discharge from hospital. Needs were assessed using a semi-structured interview and a survey in a sample of 209 adults hospitalized with a stroke. Participants were divided into three groups—those needing occupational therapy; those receiving occupational therapy, and those neither needing nor receiving occupational therapy. Thirteen percent (n = 28) reported an unmet need for occupational therapy and were more dependent in activities of daily living (ADL) before and after their stroke and had lower acute functional independence measure (FIM) scores than the comparison groups (p < .05). Participants with unmet needs for occupational therapy were more likely to report unmet needs related to upper extremity function, basic and instrumental ADL, leisure, assistive devices, and the resumption of social roles.     

Race disparities in health among older adults: examining the role of productive engagement

Productive engagement is a potential pathway to health for older adults, but this relationship varies by race. This study examines the relationship of productive engagement to the health and observed health disparities of older African American and white adults. Productive activities include formal and irregular paid employment, caregiving, volunteering, and informal social assistance. The authors analyzed longitudinal panel data on individuals ages 60 and older from the Americans' Changing Lives survey with generalized estimating equations methods. Indicators of self-rated health and functional status were regressed separately on measures of productive engagement after accounting for sociodemographic differences and prior levels of health. Analyses were stratified by race and compared. Engagement in productive activities predicts better functional status for both groups, but higher self-rated health only among white adults. Number of activities performed was positively related to both health measures for all individuals, and hours of engagement and the ratio of paid to unpaid hours did not predict health outcomes.     

Access and acceptability of community‐based services for older Greek migrants in Australia: user and provider perspectives

In most developed nations, ageing migrants represent a growing proportion of the older population. Policies that emphasise care in the community depend on older migrants having access to formal services along with informal support, yet little is known about how older migrants experience community‐based formal services. By examining the views of both Greek elders in Australia and those of formal service providers, this research fills an important gap in the literature around access to and acceptability of formal community‐based services for older migrants. A research team including two Greek background researchers used existing social groups and a snowball sampling method to conduct face‐to‐face interviews and focus groups with seventy older Greeks in Adelaide, Australia. In addition, 22 community‐based service providers were interviewed over the telephone. Results from users and providers showed that while many older Greeks experience service access issues, they also relied heavily on family for support and assistance at home. Reliance on family was both in preference to formal services or where formal services were used, to locate, negotiate and monitor such services. Common barriers identified by both groups included cost, transport and availability, but additional challenges were posed by language, literacy and cultural attitudes. Demographic changes including greater employment mobility and female workforce participation among adult children will have implications for both formal and informal care providers. Formal service providers need to ensure that services are promoted and delivered to take account of the important role of family in informal support while also addressing the access challenges posed by language and literacy. Research conducted by researchers from the same cultural background in the respondent’s native language can further advance knowledge in this area.     

Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

Encounters between older adults and occupational therapists during the assistive technology application process

ABSTACT

Background: From the perspective of older adults, the assistive technology application process is complex and their perceived involvement varies. Occupational therapists find it challenging to satisfy their clients’ needs while complying with the eligibility criteria of the service provision system. Research has shown that, from the perspective of both clients and occupational therapists, the application process is perceived to be challenging. However, little is known about which specific actions and experiences during the application process give rise to this perceived complexity.

Aim: The aim of this study was to investigate older adults’ and occupational therapists’ actions and experiences of their encounters during the assistive technology application process.

Material and method: Data were generated using repeated participant observations and informal interviews. Ricoeur’s theory of interpretation was used to interpret and discuss the data generated.

Results: Two themes emerged: Expressing needs and translating needs.

Conclusion: Older adults express their needs in different ways. When the older adults’ expression of needs does not correspond with the service provision system’s conditions of eligibility, the occupational therapists act as mediators, by translating experienced needs so that they are expressed in a way that corresponds to the expression of the eligibility criteria.     

Impairments in Individual Autonomous Living Tasks and Time to Self-Care Disability in Middle-Aged and Older Adults

ObjectivesImpairments in specific tasks that are necessary for independent living may identify future self-care limitations, and the use of time-varying covariates can better capture the fluidity in functional capacity trajectories over time. The purpose of this study was to determine the associations between individual instrumental activities of daily living (IADL) impairments and time to activities of daily living (ADL) disability for middle-aged and older adults in the United States.DesignLongitudinal panel.SettingDetailed interviews that included physical, biological, and psychosocial measures were completed in person. The core interview was typically completed over the telephone.ParticipantsA nationally representative sample of 15,336 adults aged at least 50 years from the 2006 wave of the Health and Retirement Study was followed for 8 years.MeasuresAbility to perform IADL and ADL were self-reported at each wave. Separate covariate-adjusted Cox models were used to examine the time-varying associations between individual IADL impairments and time to ADL disability.ResultsThe presence of each IADL impairment was associated with a higher hazard ratio for an ADL disability for the following functions: 2.52 [95% confidence interval (CI) 2.35, 2.70] for grocery shopping, 1.91 (CI 1.77, 2.06) for preparing hot meals, 1.55 (CI 1.37, 1.76) for taking medications, 1.48 (CI 1.36, 1.61) for managing money, 1.41 (CI 1.27, 1.57) for using a telephone, and 1.38 (CI 1.29, 1.48) for using a map.Conclusions/ImplicationsOur findings provide insights into the disabling process by revealing how impairments in each IADL are differentially associated with time to ADL disability. Interventions aiming to retain function during aging should be informed by fluctuations in IADL performance and how specific IADL impairments may exacerbate functional capacity declines more so than others.     

Older Adults Coping With Vision Loss

Age-related vision loss is one of the most commonly cited disabling impairments of adult life. Stressors presented by vision loss can create barriers, threatening the well-being of the individual. This qualitative study of 30 older adults (65 to 95 years of age) investigated vision loss and coping strategies. All participants experienced unexpected sight loss during their adult years. The Adaptation to Age-Related Vision Loss (AVL) Scale was used in this study to examine psychosocial adaptation to vision impairment. The coping strategies of vision impairment were assessed by collecting self-reported reflections toward vision loss and how the change impacted the participant's life. Given the correct balance of support, confidence, and acceptance, older adults can confront the existing barriers and focus on the ability to optimize function with vision loss. Health care service providers and practitioners can provide needed assistance and a helpful guide to assist older adults in successfully coping with vision impairment.     

Prevalence of Hospital-Associated Disability in Older Adults: A Meta-analysis

ObjectivesHospital-associated disability (HAD), defined as loss of independence in activities of daily living (ADL) following acute hospitalization, is observed among older adults. The study objective is to determine overall prevalence of HAD among older adults hospitalized in acute care, and to assess the impact of study initiation year in moderation of prevalence.DesignMeta-analysis of data collected from randomized trials, quasi-experimental, and prospective cohort studies. English-language searches to identify included studies were completed February 2018 and updated May 2018 of electronic databases and reference lists of studies and reviews. Included studies were human subjects investigations that measured ADL ≥2 time points before or during and after hospitalization and reported prevalence of ADL decline among older adults.SettingAcute care hospital units.ParticipantsAdults aged ≥65 years hospitalized in medical-surgical acute care; total sample size across all included studies was 7375.MethodsIndependence in ADL was assessed using the Katz Index of Independence in Activities of Daily Living and Barthel Index of Independence in Activities of Daily Living.ResultsRandom effects meta-analysis across included studies identified combined prevalence of HAD as 30% (95% CI 24%, 33%; P < .001). The effect of study initiation year on the prevalence rate was minimal. A large amount of heterogeneity was observed between studies, which may be due in part to nonstandardized measurement of ADL impairment or other methodological differences.Conclusions and implicationsHospitalization in acute care poses a significant risk to functional independence of older adults, and this risk is unchanged despite shorter lengths of stay. The evidence supports the continued need for hospital-based programs that provide assessment of functional ability and identification of at-risk older adults in order to better treat and prevent HAD.     

Trust in older persons: A quantitative analysis of alignment in triads of older persons,informal carers and home care nurses

Self‐management by older persons could be influenced by the level of trust found in triads of informal carers, formal care providers and care recipient, the older person. Little research has been done on care providers’ trust in older persons. This study aims to explore the level of trust that informal carers and home care nurses have in older persons, the extent of alignment in triads and the relationship between trust in older persons and self‐management. We conducted a cross‐sectional survey study in the Netherlands, sampling 133 older persons, 64 informal carers and 72 nurses, which resulted in 39 triads. Alignment level was analysed through Intraclass Correlation Coefficient 1 scores and absolute and mean difference scores. Correlation analysis and one‐way analysis of variance measured the relationship between trust and self‐management. The results show that triads contain both alignment and misalignment. Misalignment occurs mostly when informal carers and nurses have little trust in the older person while this person views their own behaviour towards their caregivers positively. Care providers’ trust levels relate significantly to their perception of the person's ability to self‐manage, but not to the person's self‐rated ability. This could be explained by care providers not communicating their intrinsic trust in the older person to them. Trust building could be enhanced by organising discussions of mutual expectations of trust and both formal and informal care providers could benefit from compassionate assessment training, to learn how to openly express their trust in the older person.     

Medication use among Medicaid users of home and community-based services

This study examines factors associated with access to medications for older persons and younger adults with physical disabilities who use Medicaid home and community-based services (HCBS). Using data from a six-State survey, we find the large majority of this population receives the medications it needs and has needed assistance in taking these drugs. However, 6.3 percent of this population reports unmet medication needs with financial access listed as the primary reason. Lack of transportation increases the probability of unmet need, while increased satisfaction with paid help lowers this probability. This study highlights the need to study the interaction of Medicaid, social services programs, and financial barriers for this disabled population.