The association between cognitive impairment and community service use patterns in older people living in Australia

Family plays a vital role in supporting individuals with dementia to reside in the community, thus delaying institutionalisation. Existing research indicates that the burden of care‐giving is particularly high for those caring for a person with dementia. Yet, little is known about the uptake of community services by people with a diagnosis of dementia. Therefore, this study aims to better understand the relationship between cognitive impairment and the receipt of community care services. In order to examine the relationship, secondary data collected across Queensland, Australia, from 59,352 home‐care clients aged 65 and over during 2007–2008 are analysed. This cross‐sectional study uses regression analyses to estimate the relationship between cognitive impairment and service mix, while controlling for socio‐demographic characteristics. The dependent variables include formal services, informal care and total home‐care service hours during a 12‐month period. The findings of this study demonstrate that cognitive impairment is associated with accessing more hours of respite and day centre care but fewer hours of other formal care services. Additionally, the likelihood of support from an informal caregiver increases when a client becomes cognitively impaired. Therefore, this study demonstrates that there is an increased need for respite programmes to support informal caregivers in the future, as the population of people living with dementia increases. These findings support the need for investigations of new and innovative respite models in the future.     

Time spent on informal and formal care giving for persons with dementia in Sweden

The purpose of this paper was to explore the time spent on caring by families of persons with dementia in Sweden. As part of a European Commission project, interviews were carried out on a sample of 92 carers, caring for persons with dementia. The interviews focused on time spent on caring, IADL, ADL and surveillance, as well as formal support received and used. Informal care, measured as hours spent caring, was about 8.5 times greater than formal services (299 and 35 h per month, respectively). Approximately 50% of the total informal care consisted of time spent on surveillance (day and night). Formal care input and informal support, in terms of ADL increased with dementia severity. A regression analysis showed that dementia severity, behavioural disturbances and coping were associated with the amount of informal care. This study gives some new perspectives on informal care giving for persons with dementia and support strategies in general. Some carers do carry a very heavy 24 h responsibility. This aspect of caring must be addressed by the development of well-targeted respite and relief support programmes.     

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.     

Who Is Responsible? A Man With Dementia Wanders From Home,Is Hit by a Train,and Dies

The impact of dementia and Alzheimer's disease extends far beyond the healthcare needs of the person with dementia. As the disease progresses, individuals with dementia often require ongoing formal or informal care for their basic daily routine because of behavior changes and continuing loss of cognitive function. Most of the care for people with dementia takes place at home, and the unpaid, informal caregivers are often spouses or other relatives. Providing long-term informal care at home for someone with dementia is psychologically, physically, and financially draining. The tragedy described in this case elucidates the far-reaching societal impact of dementia care and the implicit health policy considerations.In 2007, a 91-year-old Japanese man with dementia was in the care of his wife when he wandered from home, was hit by a train, and died, immediately affecting the Central Japan Railway Company operations and, subsequently, legal practice as well as Japanese elder care policy. The railway sued the man's wife and son for negligence and lost revenue, winning both trials at the local and district courts. This ruling shocked families and caregivers in Japan, where care for elderly parents traditionally falls on the oldest son, and brought attention to the complex issues related to dementia care. A decade later, we revisit this case to provoke a renewed dialogue about the matrix of responsibilities and liabilities associated with caregiving; to illuminate the unmet needs of the person with dementia, as well as his or her informal caregivers; and the financial implications related to long-term care policy. We close with 2 practical suggestions which preserve the dignity of the individual and provide reassurance for caregivers.     

Resident medical care utilization patterns in continuing care retirement communities

This article presents the findings of an evaluation of medical care service utilization by two elderly cohorts: one living in continuing care retirement communities (CCRCs) and the other living in traditional community settings. CCRC residents' overall use of Medicare-covered medical services did not differ significantly from that of the traditional community-residing elders. Both groups incurred annual per capita expenditures of approximately $2,000. In their last year of life, however, CCRC residents displayed significantly lower expenditures for hospital care ($3,854 versus $7,268) but higher expenditures for Medicare or non-Medicare-covered nursing home care ($5,565 versus $3,533).     

Informal caregivers' experiences of formal support in a changing context

As the location of long-term care of elderly people moves to homes and communities, and responsibility for care shifts to families, understanding the experience of people in this situation is necessary to ensure that support is appropriate, accessible and effective. The present paper explores informal caregivers' and recipients' relationships with formal support, drawing on thematic and narrative analysis of 30 in-depth interviews with self-identified family caregivers conducted over a year in a mid-size city in Ontario, Canada. All but six of these caregivers had had some interaction with formal support. The semistructured interviews explored caregivers' knowledge about, and perceptions and experiences of accessing and using formal support. Interpretation reveals how confusion and lack of knowledge about services, the inflexibility and lack of availability of services, and increasing pressure on the quantity and quality of publicly funded community-based resources combine to impact negatively on the experience of accessing and using formal support. Different ideas about the relative roles and responsibilities of seniors, informal caregivers and 'family' in general, and the state both shape and are shaped by policies and the situated realities of the provision of formal support. Providing care at home creates both opportunities and constraints for caregivers in their interactions with formal support. Lastly, this paper highlights the difficulties of interacting with publicly funded formal support as the costs of care are moved away from the state and onto families and individuals.     

The economic cost of senile dementia in the United States, 1985

Senile dementia is a progressive and irreversible decline of mental functions. The symptoms are mental confusion, memory loss, disorientation, cognitive decline, and inappropriate social behavior. It is one of the most common, costly, and distressful diseases among the elderly in the United States. Information on the economic costs of senile dementia is essential for determining research priorities and the allocation of resources to support aging and medical research. Economic consequences, such as direct medical and nonmedical expenditures by patients' families and the amount of time by third parties in caring for patients with senile dementia, are substantial. However, little systematic accounting to estimate these consequences has been undertaken. This paper attempts to estimate various costs associated with the care of senile dementia, based on available secondary data. We have used the direct cost and indirect cost approach and avoided double counting to identify the additional economic costs due to senile dementia. The total, direct national cost of senile dementia is $13.26 billion, which includes $6.36 billion of medical care costs, $2.56 billion of nursing home care costs, and $4.34 billion of social agency service costs. The indirect cost for community home care alone is $31.46 billion, more than twice the total direct costs. The costs of premature death and loss of productivity due to senile dementia are about $43.17 billion. Although most of the indirect costs were imputed from the value of housekeeping or productivity loss, the magnitude of indirect costs reflects the serious consequences and burden on society's resources of this disease.     

Societal costs of home and hospital end‐of‐life care for palliative care patients in Ontario,Canada

In Canada, health system restructuring has led to a greater focus on home‐based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end‐of‐life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end‐of‐life care associated with two places of death (hospital and home) using a prospective cohort design in a home‐based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out‐of‐pocket, informal care‐giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care‐giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end‐of‐life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end‐of‐life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end‐of‐life care, resulted in changes in the distribution of costs borne by different stakeholders.     

Cost of Diagnosing and Treating Cognitive Complaints: One-year Cost-evaluation Study in a Patient Cohort from a Slovenian Memory Clinic

IntroductionDementias present a global health challenge and give rise to significant economic costs. This study aims to evaluate the economic impact of one-year outpatient healthcare, nursing home, and formal and informal home help costs for all patients referred to the Centre for Cognitive Impairments at the Department of Neurology, Ljubljana University Medical Centre, Slovenia.MethodsData was acquired retrospectively from physicians’ records and the costs for 2015 were calculated. Total costs were estimated by means of a bottom-up calculation of outpatient visits, diagnostic examinations and anti-dementia medication. In a subgroup of 120 patients with dementia, the Resource Utilization in Dementia questionnaire was used to estimate formal and informal care costs.ResultsA total of 720 patients visited the memory clinic in 2015. Diagnosis at first visit was subjective cognitive or mild cognitive impairment (SCI/ MCI) for 322 patients, dementia for 258 patients, and psychiatric or other disorders for 140 patients. The average annual cost per patient was EUR 578. It was highest for patients with dementia (EUR 751), EUR 550 for patients with SCI/MCI, and lowest for patients with psychiatric and other disorders (EUR 324). Monthly informal and social care costs were between EUR 1,037 and EUR 3,369, depending on the methodology used.ConclusionThe cost of diagnosing a cognitive disorder depends on how extensive the diagnosis is. With an estimated prevalence of 34,137 persons with dementia in Slovenia, basic diagnostic investigations incur costs of approximately EUR 7 million. Direct medical costs represent a smaller portion of total dementia costs; this is because annual costs for formal and informal home help are estimated at EUR 265 million and nursing home placements at EUR 105 million.     

Impacts of Informal Caregiver Availability on Long-term Care Expenditures in OECD Countries

Objective. To quantify the effects of informal caregiver availability and public funding on formal long-term care (LTC) expenditures in developed countries.
Data Source/Study Setting. Secondary data were acquired for 15 Organization for Economic Cooperation and Development (OECD) countries from 1970 to 2000.
Study Design. Secondary data analysis, applying fixed- and random-effects models to time-series cross-sectional data. Outcome variables are inpatient or home heath LTC expenditures. Key explanatory variables are measures of the availability of informal caregivers, generosity in public funding for formal LTC, and the proportion of the elderly population in the total population.
Data Collection/Extraction Method. Aggregated macro data were obtained from OECD Health Data, United Nations Demographic Yearbooks, and U.S. Census Bureau International Data Base.
Principal Findings. Most of the 15 OECD countries experienced growth in LTC expenditures over the study period. The availability of a spouse caregiver, measured by male-to-female ratio among the elderly, is associated with a $28,840 (1995 U.S. dollars) annual reduction in formal LTC expenditure per additional elderly male. Availability of an adult child caregiver, measured by female labor force participation and full-time/part-time status shift, is associated with a reduction of $310 to $3,830 in LTC expenditures. These impacts on LTC expenditure vary across countries and across time within a country.
Conclusions. The availability of an informal caregiver, particularly a spouse caregiver, is among the most important factors explaining variation in LTC expenditure growth. Long-term care policies should take into account behavioral responses: decreased public funding in LTC may lead working women to leave the labor force to provide more informal care.     

Predictors of the Time to Institutionalization in Young- Versus Late-Onset Dementia: Results From the Needs in Young Onset Dementia (NeedYD) Study

ObjectiveTo investigate the time from symptom onset to institutionalization in persons with young-onset dementia (YOD) and compare these findings with late-onset dementia (LOD), and to determine which factors predict institutionalization in persons with YOD compared with LOD.Design/SettingLongitudinal study of community-dwelling patients with YOD and LOD and their caregivers.ParticipantsA total of 226 patients with YOD and 102 with LOD and their informal caregivers were recruited through memory clinics and health care facilities.MeasurementsCox proportional hazard models were used to relate covariates with time to institutionalization. The main outcome was time from symptom onset to institutionalization. Key predictors were cohort (YOD or LOD), neuropsychiatric symptoms, caregiver distress caused by neuropsychiatric symptoms, and caregivers’ sense of competence (Short Sense of Competence Questionnaire total score).ResultsThe time from symptom onset to institutionalization was nearly 9 years for patients with YOD compared with approximately 4 years for patients with LOD. In the YOD group, apathy significantly predicted time of institutionalization. Furthermore, the caregiver’s competence in caring for the person with dementia significantly predicted institutionalization in both groups.ConclusionsPatients with YOD are cared for at home for a longer period than patients with LOD. The results of this study underline the importance of a timely diagnosis for these patients and their families to facilitate the initiation of appropriate care and support. Support programs aimed at enhancing the caregivers’ sense of competence and ability to deal with neuropsychiatric symptoms, especially apathy, may postpone the institutionalization of the patient.     

Post-hospital support program for the frail elderly and their caregivers: a quasi-experimental evaluation.

This paper evaluates the Post-Hospital Support Program for the frail elderly and their caregivers using a quasi-experimental design. The program goals were to reduce stress in the caregivers, improve functioning and reduce mortality in patients, and reduce health service utilization in patients. Subjects were patients at the Johns Hopkins Hospital in Baltimore, Maryland, age 65 or over, who were returning home to the care of a non-paid caregiver and who had extensive post-hospital care needs which were expected to continue for at least one year. The 93 comparison group patient/caregiver pairs were discharged between May 15, 1983 and May 14, 1984. The 98 treatment group pairs were discharged between May 15, 1984 and May 14, 1985. Interviews were conducted with patients and caregivers at 1, 3, 6, 9, and 12 months after discharge. Results showed a slight reduction in caregiver stress and a substantial reduction in hospital days used by the treatment group. When confounding and history effects are taken into consideration, an average difference of 6.5 days per patients remains. The data also suggest that the treatment program may have postponed some deaths and nursing home placements. The results suggest that support services for the frail elderly and their caregivers can be cost efficient by reducing hospital length-of-stay. Savings were estimated at $4,585 per patient per year in this study. However, further work is needed to design programs which more effectively reduce caregiver stress.     

Community-based dementia care re-defined: Lessons from Iceland

Studies of families caring for persons with dementia living at home often reflect feelings of being forgotten and abandoned by the authorities to shoulder the responsibility for care-giving. This has increased interest in how formal services can better support these families. This article analyses how health and social care professionals envision the needs of families of persons with dementia living in the community. It also describes the contributions of the formal care system to these families. The study design was qualitative. It involved interviews with professionals (N = 20), field observations from the settings where they worked, and public documents addressing care-giving for people with dementia. Data were analysed using the framework method. The findings reflected how those providing services to persons experiencing cognitive changes mainly understood the services as specialised. They focused on the diagnosis and treatment of the individual with dementia. They considered other aspects of care, such as attending to practical issues of daily life, to be a private matter, for which the family was responsible. In later stages of dementia, specialised day programs become available, offering rehabilitation to motivate positive daily living—for both the person experiencing dementia and family-centred supporters. Professionals in the field described primary care, community-based healthcare and home care services as poorly equipped to support these families. Participants acknowledged that families were often under a lot of stress and might need more support earlier in the illness. However, they saw themselves as powerless. Towards the end of the data collection, services were being re-designed to emphasise the role of primary care. In light of its holistic and family-centred approach, primary care may be well placed to integrate relational understanding of living with dementia and specialised knowledge of dementia treatment.     

The Continuation of Home Care to Severely Impaired Children and Aged in Israel:

There are a growing number of children and aged with severe chronic health problems in the community. Mothers become the prime caregivers to these children and aging spouses or middle-aged offspring the caregivers to these aged. The services offered to these families are determined by economic and social conditions, as well as changing fashions, rather than knowledge of the patients' and caregivers' needs. The purpose of this study was to assess the impact of homecare upon families caring for children versus those caring for aged and these families' attitudes toward continuation of home care versus institutionalization. The families included in the study were drawn randomly from the case load of community nurses in central Israel. In-depth interviews were conducted with 92 families of severely impaired children and 181 families of severely impaired adults and aged in their homes. While the majority of both populations carry a heavy burden of caregiving over years. they also receive gratification from their ability to care for their patient at home. There is little difference between those caring for children and those caring for adults in their attitudes toward continuation of home care. Mental rather than physical impairment, a deteriorating illness trajectory; depression, aggression and tension of the care-giver, the absence of sufficient social support and home care services correspond with negative feelings toward continued home care. The perceived impact of caregiving responsibilities upon the caregivers' lives, the ability to tolerate and manage symptoms and above all the quality of the patient-caregiver relationship influenced the caregivers' attitudes toward institutionalization in both populations. Family attitude toward continued homecare and institutionalization of children and adults are compared and the needs for services discussed.     

The continuation of home care to severely impaired children and aged in Israel: family attitudes.

There are a growing number of children and aged with severe chronic health problems in the community. Mothers become the prime caregivers to these children and aging spouses or middle-aged offspring the caregivers to these aged. The services offered to these families are determined by economic and social conditions, as well as changing fashions, rather than knowledge of the patients' and caregivers' needs. The purpose of this study was to assess the impact of homecare upon families caring for children versus those caring for aged and these families' attitudes toward continuation of home care versus institutionalization. The families included in the study were drawn randomly from the case load of community nurses in central Israel. In-depth interviews were conducted with 92 families of severely impaired children and 181 families of severely impaired adults and aged in their homes. While the majority of both populations carry a heavy burden of caregiving over years, they also receive gratification from their ability to care for their patient at home. There is little difference between those caring for children and those caring for adults in their attitudes toward continuation of home care. Mental rather than physical impairment, a deteriorating illness trajectory; depression, aggression and tension of the caregiver, the absence of sufficient social support and home care services correspond with negative feelings toward continued home care. The perceived impact of caregiving responsibilities upon the caregivers' lives, the ability to tolerate and manage symptoms and above all the quality of the patient-caregiver relationship influenced the caregivers' attitudes toward institutionalization in both populations. Family attitude toward continued homecare and institutionalization of children and adults are compared and the needs for services discussed.     

Post-acute home care and hospital readmission of elderly patients with congestive heart failure

After inpatient hospitalization, many elderly patients with congestive heart failure (CHF) are discharged home and receive post-acute home care from informal (family) caregivers and formal service providers. Hospital readmission rates are high among elderly patients with CHF, and it is thought that use of informal and formal services may reduce hospital readmission during the post-acute period. Using proportional Cox regression analysis, the authors examined the independent and joint effects of post-acute informal and formal services on hospital readmission. No evidence of service impact was found. Rather, hospital readmission was associated with a longer length of CHF history and noncompliance with medication regimes. Research, policy, and practice implications are discussed.     

Burden of delayed admission to psychogeriatric nursing homes on patients and their informal caregivers

OBJECTIVE: To assess the deleterious effects of waiting for admission to a nursing home on the state of health of patients and their informal caregivers, and on the burden of caring. DESIGN AND PARTICIPANTS: Prospective longitudinal study consisting of interviews with informal caregivers during the period on the waiting list and after admission of the patient to a nursing home. Analysis of patients' files on diagnosis, date of registration on the waiting list, and date of admission to nursing home. SETTING: Ninety three patients registered on waiting lists for admission to a psychogeriatric nursing home in two regions of Amsterdam. RESULTS: Seventy eight of the 93 patients were admitted to a nursing home. The burden on the caregivers declined after admission of the patient but depressive symptoms did not. After 6 months a subgroup of 19 caregivers whose relatives were still waiting to be admitted were interviewed. The health of these patients remained stable during this waiting period and only problems in activities of daily living increased. The burden on these 19 informal caregivers and their state of health remained stable during the waiting period. CONCLUSIONS:A decline in the state of health and a rise in the burden on caregivers during the waiting period did not occur. However, a decrease in the burden and an improvement in mental health could have started earlier if patients had been admitted earlier.     

Balancing Formal and Informal Care

Implications of the presence of informal help for the adequacy of formal home care services are examined in a public program that restricts service authorizations to needs that are not addressed by informal caregivers. Four areas of need were examined: local transportation, shopping, housecleaning, and dressing/bathing. The mixture of formal and informal help varied greatly from one area of need to another. Contrary to expectations, the frequency of informal help tended to be positively associated with the reporting of unmet need. The data suggest that in some areas of need, the reporting of unmet need reflects the view that the demands on informal caregivers are excessive and that additional formal services would provide them with welcome relief.     

Balancing formal and informal care: meeting needs in a resource-constrained program

Implications of the presence of informal help for the adequacy of formal home care services are examined in a public program that restricts service authorizations to needs that are not addressed by informal caregivers. Four areas of need were examined: local transportation, shopping, housecleaning, and dressing/bathing. The mixture of formal and informal help varied greatly from one area of need to another. Contrary to expectations, the frequency of informal help tended to be positively associated with the reporting of unmet need. The data suggest that in some areas of need, the reporting of unmet need reflects the view that the demands on informal caregivers are excessive and that additional formal services would provide them with welcome relief.     

The cost of home hospice care for terminal patients in Israel

This study examined and compared the cost of care provided to terminal metastatic cancer patients by home hospices and by conventional health services. The study population included 146 patients with metastatic cancer. Half received home hospice services, and the other half received conventional services. The average overall per-patient cost of care was, respectively, $4761 (operating costs included) and $12 434. On average, the costs were lower for older patients. A multiple regression analysis revealed that treatment units per patient, care framework, and patient age significantly contributed to explaining the cost variance. The findings suggest a financial advantage for home hospice care for terminal patients. This should be investigated further, as should the cost of informal caregivers and patient and caregiver satisfaction with the quality of care in both frameworks.