A cost-effectiveness analysis of home care and community-based nursing homes for stroke patients and their families

A prospective study designed for 336 hospitalized patients with stroke and their families, who were followed from the discharge day to the third month after being discharged, was carried out in order to compare the costs and effectiveness of home care with the community-based nursing homes for stroke patients with different physical function disabilities in terms of ADL scores and their families. The ADL scores of the patients with severe physical function disability did not improve with or without long-term care; however, the patients with moderate physical function disability were significantly improved at the end of the third month, even without interventions from long-term care. The family costs of the patients in nursing homes were substantially lower than the costs for the patients who stayed at home, and the relationship of the family costs of the patients cared for in their own homes was proportional to the patients'physical function status. The labour input from family caregiving accounted for at least 60% of the total family costs of the patients who stayed at home, and the paid for long-term care services accounted for at least 60% of total family costs when the patients stayed in nursing homes. The multiple linear regression demonstrated that the degree of caregiving from families was a predictor of the amount of the costs families incurred for patients with severe physical function disability; as a result the ADL scored on discharge significantly influenced the average total family costs for the patients cared for in their own homes.     

Comparisons of the cost-effectiveness among hospital chronic care, nursing home placement, home nursing care and family care for severe stroke patients

AIM: This study compared the cost and effectiveness of long-term institutional care and home care for stroke patients with severe physical disabilities. BACKGROUND: Whether home care is more economical or effective than institutional care for patients with chronic illnesses remains controversial when the cost of family labour is considered. Thus, decisions concerning the appropriate type of care setting for patients with severe chronic illness remain difficult. METHODS: From November 1995 to March 1996, 313 hospitalized stroke patients with severe physical disabilities treated at one of five hospitals in the Taipei metropolitan area were followed from the day of hospital discharge until the third month after discharge. These 313 patients were divided into four groups as follows: (1) 106 who were admitted to a chronic care unit in a hospital, (2) 60 who were admitted to nursing homes, (3) 60 who received professional home nursing care and (4) 87 who returned home without receiving professional care. The change of physical functional status in the patient was examined as the difference between activities of daily living (ADL) scores measured at discharge and at the end of the third month after discharge. RESULTS: Information on family costs for caregiving, including pay for long-term services utilized, labour costs for caregiving and out-of-pocket expenditures for miscellaneous materials was obtained during a weekly telephone interview. The results indicated that caring for patients in their own homes was not only more expensive but was also less effective in improving ADL scores than caring for patients in nursing homes and in chronic care units of hospitals. CONCLUSIONS: The results suggest that caring for patients with severe physical disabilities in institutions is more appropriate than caring of them at home.     

Cost analyses of home care and nursing home services in the southern Taiwan area

This study compares the cost of long-term care provided at patient homes with that of long-term care provided in nursing homes in southern Taiwan. Caring for a patient with a high degree of dependence at home is more expensive than caring for a patient in a nursing home facility when family costs and provider costs are considered together. This phenomenon is not demonstrated for patients with medium degrees of dependence. To be cost-effective, home care services should target patients with medium physical disability, and nursing home care should focus on patients with high levels of dependence.     

Outcomes of family involvement in care intervention for caregivers of individuals with dementia

BACKGROUND: Despite the increasing number of individuals with dementia relocated from caregiving at home to a nursing home, there is only a small body of literature examining the influence of institutional family-oriented practices on family member perceptions of care and family-staff relationships. OBJECTIVE: The study tested the effects of the Family Involvement in Care partnership intervention on family members' perceptions of their caregiving role, relationships with staff, and satisfaction with the care of relatives with dementia residing in special care units as well as the effects on staff attitudes toward families and staff satisfaction with a caregiving role. METHODS: A quasi-experimental design with nonequivalent groups and repeated pretest and posttest measures was used to examine the effects of the Family Involvement in Care intervention. The study recruited 14 Midwestern nursing home special dementia care units, matched by aegis and staff turnover, and randomized from matched pairs to experimental and control conditions. The samples included 185 family members and 895 staff. The Family Involvement in Care intervention is a protocol for family and staff negotiation of a written partnership agreement. Family caregiver outcomes were measured using instruments pretested for reliability and validity. Data were analyzed using hierarchical linear modeling. RESULTS: With adjustment for multiple tests, statistically significant beneficial intervention effects were found in three areas of family caregiver outcomes (emotional reactions to the caregiving role, perceptions of relationships with staff, and perceptions of care for relatives) and in one of three areas of staff outcomes (staff perceptions of the family caregiving role). For family members, effects were found for the measures assessing loss, captivity, staff disregard, resident activities, and physical care. Some of the intervention effects for family members were found only for caregivers of the same generation as the resident. For staff, effects were found for measures of dominion, disruption by family, and irrelevance of family. CONCLUSIONS: The results of the study indicate that the Family Involvement in Care intervention improves the caregiving experience of family members in nursing homes as well as nursing home staff attitudes toward family members. The intervention did not influence the perceived conflict with staff on the part of family caregivers or the perception of a partnership with family caregivers on the part of staff.     

Care providers’ perceptions of the importance of oral care and its performance within everyday caregiving for nursing home residents with dementia

Scand J Caring Sci; 2011; 25; 92–99
Care providers’ perceptions of the importance of oral care and its performance within everyday caregiving for nursing home residents with dementia Background: The oral caregiving in nursing homes for persons with dementia often becomes complicated due to the patients’ lack of compliance, which in turn can result in giving oral care a low priority in daily care. Furthermore, directives for responsibilities are unclear. Objective: The aim of this article was to describe care providers’ perception of and reasoning for the oral care for nursing home residents with dementia and to describe registered nurses’ reasoning in relation to their responsibility for monitoring oral care interventions within the regular caregiving routines for nursing home residents with dementia. Methods: Two sub‐studies were carried out; focus group discussions with nine care providers and interviews with four nurses. All participants were staff in nursing home units specialized in dementia. Results: The focus group discussion revealed three themes: Art of caregiving, Barriers and Treatment strategies. Themes related to the nurses’ statements about oral hygiene within caregiving were Care, Responsibility for care and Information. Conclusion: Three main findings from the study are discussed: Unclear responsibilities of different staff members related to daily oral care for the nursing home patients; a lack of guidelines and routines for oral hygiene and a lack of guidelines for sharing information between the different professional groups.     

Comparison of resource utilization for Medicaid dementia patients using nursing homes versus home and community based waivers for long-term care

BACKGROUND: Medicaid waiver home and community-based long-term care services (HCBS) may provide a partial solution to the escalating costs of long-term care. Persons with dementia can have complex caregiving needs; it is unknown whether their expenditures and resource utilization differ between community-based versus institutional settings. OBJECTIVE: To compare expenditures and resource utilization for Medicaid recipients with dementia who received long-term care through a nursing home versus HCBS waivers. DESIGN: Twelve-month cohort study. SETTING: Indiana Medicaid administrative data from 2001 through 2004. PARTICIPANTS: Medicaid recipients with dementia who lived in the community 6 months before receiving long-term care through nursing homes (N = 1534) or HCBS waivers (N = 174). MEASUREMENTS: Monthly inpatient and emergency department rates and total expenditures adjusted for prior use, demographics, insurance status, and comorbidities. RESULTS: Adjusted rates of inpatient use were stable for nursing home patients (0.06) but significantly increased over 12 months for HCBS recipients (0.07-0.12; P = 0.048). Adjusted total expenditures increased over 12 months from $1419 to $2002 for HCBS recipients (P < 0.001), but remained stable for those in nursing homes ($3413-$3336). Long-term care expenditures were on average $1688 per month higher for those in nursing homes. CONCLUSIONS: The escalation in inpatient use for HCBS waiver recipients suggests that future development of HCBS programs should consider the unique needs of persons with dementia so as to optimize their health outcomes. Despite increasing inpatient use among HCBS recipients, their overall expenditures remained significantly lower than those of nursing home patients.     

Consistency Between Preference and Use of Long-Term Care Among Caregivers of Stroke Survivors

ABSTRACT Effective arguments have been made for the importance of expanded attention to understanding how family preferences influence decisions to choose long-term care. The effects of preference on the utilization of long-term care deserve further research, especially on a longitudinal basis. The family members of 582 first-time stroke patients from the neurology departments of four teaching hospitals in Taiwan were categorized into two groups based on their attitudes toward type of long-term care, i.e., a preference for nursing home care (n₁= 324) or a preference for home care (n₂= 258). The consistency rate between preference and utilization of the type of long-term care was estimated by the division of number of families preferring one type of long-term care by the number of families actually utilizing the services preferred. Results indicated that the consistency rate for those with nursing home preference was 8.3% while the consistency rate for those with home care preference was 94.2%. Accessibility of nursing home facilities near family residences was significantly associated with whether those preferring nursing home services actually utilized them, and the odds ratio was 20.8. The family manpower available for caregiving at home was tremendously associated with whether families utilized home care when home care was preferred; the odds ratio was 33.3. The preference for the type of long-term care was a strong predictor of the utilization when home care was preferred, yet not when a nursing home was preferred. The low consistency between preference and utilization for nursing homes preferred is due to the low accessibility of nursing home facilities in Taiwan. How to provide sufficient support to families for caregiving at home, and how to deal with the barrier of accessibility to nursing home services should be two major concerns for those who are planning and operating the long-term care system and for those trying to design institutional services and noninstitutional services as alternatives.     

Factors influencing use of home care and nursing homes

AIM: This paper reports a study comparing the characteristics of patients who use home care services and those who are cared for in nursing homes, and identifying the factors that influence the use of these care settings. BACKGROUND: The increase in the functionally dependent older population has led to an increase in the number of nursing homes and home care agencies. It has become clear that, rather than disputing which is the better of these options, it would be better to determine the characteristics of patients who use the two long-term care services. Gaining an understanding of the unique characteristics of patients who are cared for by home care agencies and those who are cared for in nursing homes will be imperative for reforming and developing long-term care systems. METHOD: The research model was based on the Anderson Model of Health Services Utilization. Interviews were conducted with 99 stroke survivors from two home care agencies and four nursing homes, and their family members, between May and December 2001. RESULTS: The patient characteristics that predicted greater use of home care rather than nursing home services were: being married, poor physical function, impaired cognitive function, higher rates of comorbidity, various medical complications, and/or number of catheters (e.g. urinary catheter, naso-gastric tube). CONCLUSION: Contrary to the findings of previous studies conducted in countries with ageing populations, our findings indicate that in South Korea home care agencies, rather than nursing homes, provide care for severely impaired patients. This may be due to differences between countries in their long-term care systems and cultural attitudes toward end-of-life care. Our results will contribute to the development or reformation of long-term care systems in countries with ageing populations, and to the development of strategies for increasing access to these services.     

Family and staff perceptions of the role of families in nursing homes

Family and staff perceptions of the role of families in nursing homes Admission to a nursing home is generally regarded as the termination of family care and the commencement of institutional care. Research suggests that following placement families are often expected to relinquish their dependent older relative to the bureaucracy of the institution. The aim of this study was to investigate family and nursing home staff perceptions of the role of families caring for residents in nursing homes. A convenience sample of 44 family carers and 78 nursing home staff completed questionnaires, and interviews were conducted with 10 family carers and 10 nursing home staff. The results suggest that family carers perceived themselves to have a greater role in caring for relatives than that perceived by the nursing home staff. Either families overestimated their involvement, or staff underestimated family involvement in caring for residents in nursing homes. Families were mostly satisfied with their role and with the care provided in nursing homes. They perceived nurses as providers of technical care and they perceived themselves as having an important role in providing social and emotional care. Families trusted the clinical judgement of the staff but the staff were reluctant to trust family carers, especially in situations where care involved an element of risk. Family roles were limited by members' own ability to care and the dependency of the resident, while professional responsibility and accountability discouraged nurses from sharing some caring roles. The results indicate that families in this study were more willing to help in nursing home care and were perhaps under-valued as a resource within the nursing home setting.     

Collaboration and control: nurses' constructions of the role of family in nursing home care

AIM: This paper reports a study examining how nursing home staff experienced working with residents' families. BACKGROUND: Working collaboratively with the family in residential aged care to provide care is consistent with nursing philosophy. The quality of the experience, however, is frequently fraught with problems for both the family and staff involved. Little research has focused on the nature of family involvement in nursing homes from the perspective of nursing home staff. METHODS: The study adopted a naturalistic paradigm. Data were collected from 30 nursing home staff members drawn from a range of metropolitan and rural facilities in Victoria, Australia by means of conversational in-depth interviews. Issues concerned with how participants constructed the role of the family in the nursing home were explored. The data were collected in 2001-2002. RESULTS: Four key elements are presented in this paper: (1) Making the transition; (2) Forming ties; (3) Keeping them at a distance and (4) Unacceptable behaviour. Some nursing home staff have developed a substantive family orientation and had adopted practices which were inclusive of the family. Equally, many attitudes which cast the family into an adversarial and competitive role were noted, and many staff members outlined practices which were indicative of a need to control the family. CONCLUSION: A rhetoric of family partnerships is prevalent in some nursing homes. The activities of staff in these homes are still primarily geared towards provision of physical care, and families' needs become secondary to getting the work done. A new model of practice is needed that sees working collaboratively with families as a legitimate and necessary part of the staff role.     

Terminal care costs in childhood cancer.

Purpose: To present a conceptualization of health care costs and to describe costs of health care in the terminal phase of childhood cancer. To present an exploratory comparison of the costs of terminal care in the hospital versus home care services, and to discuss the use of cost research in nursing practice. Method: Telephone interviews were done approximately 16 months after the death of a child to retrospectively ascertain services used, costs to the family, and insurance information. Provider billing and insurance data were subsequently collected. The families were divided into two groups based upon the use of home care or traditional hospital care during the terminal phase. Findings: Home care was less expensive for total costs than hospital care. Home care was more expensive for nonhealth care and indirect costs than hospital care. Conclusions: Nurses should consider direct health care costs, nondirect health care costs, and indirect costs when assisting family decisions about care. Nurses and families should be aware of potential cost shifting.     

Seizing possibilities for positive family caregiving in nursing homes

Aims. This paper explores the ways family members reconstruct meaning through seizing possibilities for positive caregiving in nursing homes. Background. The importance of the ability of family caregivers to adapt and accommodate has been well documented in international family caregiving research. Through engagement in caregiving activities, families learn to modify, adapt and accommodate to changes in their situation and relationships. The support family caregivers experience in learning to accommodate change is crucial in enabling them to reconstruct positive aspects of caregiving in a long‐term aged care context. Method. In this study, a hermeneutic phenomenological approach was adopted informed by the philosophical world views of Heidegger and Gadamer. Data collected by in‐depth interviews and participant observations, from a purposeful sample of 14 family caregivers, underwent hermeneutic analysis. Results. Five shared meanings associated with seizing possibilities for positive caregiving were revealed: accommodating new and different ways of caring; feeling a part of the nursing home community; seeing the whole picture; learning to care in stress‐reducing ways and learning to seize possibilities for self. Conclusion. This paper illustrates how families, through caregiving experience in nursing homes, learn to become active managers, negotiating, accommodating and redeveloping a sense of future viewed with hope, strength and positive anticipation. Relevance to clinical practice. By highlighting what is attributed significance by families, a critical examination of the difficult issues which obstruct the development of meaningful partnerships among nurses, family and their relatives is facilitated. In particular, an examination of tensions at an ideological level supports the need for future research to focus its efforts on examining the ways of implementing nursing care that facilitates partnerships that incorporate and build upon positive and equal relations among staff, families and residents in the context of the nursing home setting.     

General practitioners’ reasoning about using mobile distance‐spanning technology in home care and in nursing home care

Scand J Caring Sci; 2011; 25; 117–125
General practitioners’ reasoning about using mobile distance‐spanning technology in home care and in nursing home care The trend for health care and nursing care turns from hospital to health care and nursing care at home. Studies have shown that health care professionals have no access to patient records in home and nursing home settings. Technological development creates opportunities for a host of mobile technology solutions. The aim of this study was to describe the reasoning among general practitioners (GPs) about the use of mobile distance‐spanning technology (MDST) in care at home and in nursing homes. Seventeen GPs were divided in five groups for a group interview. The interviews were tape‐recorded and transcribed verbatim. The qualitative content analysis resulted in four areas about the MDST, MDST has an impact on GPs’ work, the nurses’ profession, and the patient and the family, with nine adherent categories. The findings were interpreted and formulated in the theme: MDST should be used with caution. The results show quite a few expressions about the MDST as useful and valuable in health care at home and in nursing home settings; however, in every category, there were text that we interpreted as caution when using the MDST. The MDST cannot be used in all situations and cannot replace human meetings in health care and nursing care at home and in nursing homes. The MDST should primarily be a tool for the profession, and understanding the professions’ reasoning about technology use in health care at home and in nursing home settings must be the base for implementing MDST.     

Factors related to the acceptance of home care and nursing homes among older Egyptians: A cross-sectional study

Background

Socio-demographic changes may deprive older Egyptians from receiving care by family members and raise the question of how they react if they become dependent on help.

Objective

The objective of this study was to determine factors related to the acceptance of home care and nursing homes among older Egyptians.

Design

A two group comparative design based on self-reports.

Participants

The sample was composed of 344 older persons receiving home care or staying in a nursing home and 267 non-care recipients.

Setting

The study was conducted in Greater Cairo.

Methods

Factors related to the acceptance of home care and nursing homes were determined separately for each group by logistic regression.

Results

Lesser feelings of shame while receiving care from non-family members were related to an increased acceptance of both kinds of care. For non-care recipients disagreement to the traditional idea of family care had a similar effect. For care recipients the experience made with a particular kind of care was strongly related to its acceptance.

Discussion

Home care is a new phenomenon in Cairo and in contrast to nursing homes it was unknown to most study participants. For this reason any conclusion about which kind of service is preferred by older Egyptians would be a premature one.

Conclusion

Feelings of shame while receiving care from a non-family member are more important than functional limitations when older Egyptians are considering the options of home care and nursing homes.     

Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta‐ethnographic study

Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta‐ethnographic study was to describe caregivers’ experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers’ experiences, were included. The family caregivers’ described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers’ unique knowledge of their relatives’ previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.     

Psychometric properties of the Caregiving Burden Scale for Family Caregivers with Relatives in Nursing Homes: Scale development

Aim: Most family caregivers continue their caregiving for frail relatives after admitting them to long‐term care facilities. The characteristics of this caregiving differ from those related to caregiving in home‐care settings. Thus, a new tool to evaluate the burden of family caregivers in institutional settings is needed. The aim of this study was to develop a new scale, the Caregiving Burden Scale for Family Caregivers with Relatives in Nursing Homes, and to confirm its validity and reliability. Methods: We conducted two cross‐sectional questionnaire surveys. The participants were a convenience sample of family members of residents in seven nursing homes for the validation study and in three nursing homes for the test‐retest study in Japan. Statistical analyses examined exploratory/confirmatory factor analyses, internal consistency, concurrent/discriminate validity, and test‐retest reliability. Results: A four‐factor solution with 16 items was selected as the most interpretable questionnaire. In the confirmatory factor analysis, the indices of fitness highly supported these results. The Cronbach's alpha coefficient for the total score was 0.86 and varied between 0.77 and 0.87 in the four domains. The scale showed moderate correlation with the Nursing Home Hassles Scale, suggesting its concurrent validity. The four domains had only a medium correlation with each other, indicating discriminate validity. Conclusions: The developed scale has acceptable validity and reliability for measuring the caregiving burden of family members with relatives in Japanese nursing homes. Future studies using the scale might lead to the improvement of care for family members with relatives in a long‐term care setting.     

Staff-family relationships in nursing home care: a typology of challenging behaviours

Aim.  This paper draws on data from a study which investigated how Australian nursing home staff constructed staff–family relationships.
Background.  Working with the family in aged care to provide the best care possible is consistent with modern nursing philosophy which espouses holistic care. The quality and enjoyment of the experience however, is frequently fraught with problems and challenges for both the staff and the family involved.
Design.  A qualitative constructivist design as described by Guba and Lincoln [ Fourth Generation Evaluation . Sage Publications, London.] was used.
Method.  Thirty paid caregivers drawn from eight nursing homes were interviewed about their experiences of working with residents' families. A constant comparative method of data analysis was used to arrive at the findings.
Results.  This paper reports on seven themes under the category of 'unacceptable behaviours'. These themes describe a range of attitudes and behaviours exhibited by families which staff members found undesirable.
Conclusions.  Staff members found a number of family behaviours challenging. Nursing home staff perceives the family as subordinate to their needs and want to retain control of the work environment.
Relevance to clinical practice.  Nursing home staff need to move away from custodial models of care focused on 'getting the work done' and develop more family friendly work practices that are inclusive of the needs of the family and view them as equal partners in care.     

Around-the-Clock Nursing Care for the Elderly in Japan

Purpose: To describe the first phase of creating a Japanese model of community-based long-term care, called around-the-clock care (ACQ, by operationally defining the components of ACC, identifying those eligible for the program, clarifying methods of planning and organization, and exploring outcomes.
Design: Exploratory evaluation for the population of frail elderly Japanese citizens living at home. A convenience sample of 44 patients receiving care from four visiting-nurse-service stations during 3 months in 1994 was used.
Methods: Needs assessments; record reviews of patient encounters; evaluations by patients, families, and visiting nurses; and reviews of administrative data.
Findings: Nurses perceived that ACC stabilized medical status, reduced the emotional and physical burden of treatment, and improved hygiene. It also reduced family caregiving burdens and the stress of family caregivers' employment responsibilities. The highest rating of ACC by patient and families was for those with the most complex physical needs. Skilled nursing at home permitted early identification and treatment of problems before they became crises or required hospitalization.
Conclusions: Early findings suggest 24-hour nurse-home helper teamwork may bean effective system of community-based long-term care and should be considered a key element of future Japanese health policy.     

The changes in caregiver burden following nursing home placement

This longitudinal study explored changes in perceived burden among Taiwanese family caregivers (n=77) from nursing home placement of an elder to four months postadmission. Higher burden at placement was related to the level of dependence of the care recipients (p=0.004), or caregiver's poor health (p<0.01). After nursing home placement for four months, global burden decreased (p<0.01) contributed primarily by lessened burden in three sub-scales: lack of family support, impact of schedule and impact of health. Burden scores on caregiver esteem and impact of finances were not decreased after placement. Duration of caregiving was the only demographic factor predicting change in global burden (p<0.001). Changes in impact on finances, and impact on health were, respectively, predicted by the perceived health (p=0.005), and religious preference (p=0.01). These results provide valuable information to healthcare providers for an understanding of the changes of caregiving burden after nursing home placement and the correlates of these changes, which may help devise an appropriate policy for alleviating the caregiver's burden.     

Patterns of elderly spousal caregiving in dementia care: an observational study

AIM: The aim of this study was to describe which caring activities eight spouses performed when caring for a partner with dementia, and in what way these activities were carried out. BACKGROUND: Family caregivers are recognized as being the primary source of care for the community's older people. The largest group is comprised of spouses, with wives as the predominant caregivers. This informal care seems to be more or less invisible and performed in silence within the family. Despite the wealth of studies, the essence of family caregiving is not well understood. METHODS: Data collection was conducted by observing the dyads in their homes. A qualitative approach inspired by grounded theory was chosen to discover qualities and describe patterns of spousal caregiving in dementia care. RESULTS: The analysis yielded four broad themes, which included nine categories. Findings from the study shed some light on the invisible aspects besides the traditional hands-on caregiving. CONCLUSION: The elderly carers were engaged in demanding and time-consuming care ranging from supervision to heavy physical responsibility. They were caring for as well as about their partners. The study also showed that spouses were successful in managing their situation in different ways. The results reported in this article are unique as they come from direct observations in family home settings where a spouse cared for a partner with dementia. Knowledge about family caregiving is valuable for nurses as there is an emphasis on collaboration between family caregivers and professionals.