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Home visits by care providers – Influences on health outcomes for caregivers of homebound older adults with dementia
Geriatric Nursing 36 (2015) 25e29
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Geriatric Nursing journal homepage: www.gnjournal.com
Feature Article
Home visits by care providers e Influences on health outcomes for caregivers of homebound older adults with dementia Christianne Fowler, DNP, RN, GNP-BC a, *, Miyong T. Kim, PhD b a b
Old Dominion University, 4608 Hampton Boulevard, Norfolk, VA 23529, USA University of Texas at Austin, School of Nursing, Austin, TX, USA
a r t i c l e i n f o
a b s t r a c t
Article history: Received 16 January 2013 Received in revised form 17 September 2014 Accepted 17 September 2014 Available online 22 October 2014
Homebound older adults benefit from provider home visits and there is an increasing need for these visits. A study was conducted to evaluate the effect of provider (MD, NP) visits on the caregivers of homebound older adults. Fifty-five caregivers were interviewed to determine any difference in health measures between those whose care recipients had access to a provider and those that did not. The participants completed the SF-36, questionnaires on demographics and access and one opened ended question. Analysis revealed statistically significant differences between the two groups of caregivers. The caregivers whose care recipients did not have access to a provider showed poorer health measures. Providers may have a positive impact on caregiver’s health as well as that of the homebound. Developing new and innovative ways to support caregivers while providing care for our patients will be even more important as the population ages and the numbers of available caregivers decrease. Ó 2015 Elsevier Inc. All rights reserved.
Keywords: Caregivers Dementia Homebound Health measures
Background Insufficient care support structures at a community level are a major barrier to providing adequate care to homebound older adults with dementia and their caregivers. At the same time, the availability of paid (formal) and unpaid (informal) caregivers are declining, and the pressure to control costs in health care has never been higher.1 In the United States, there are over 5 million people living with dementia, which translates to 1 in 9 of those over 65 years of age.2e4 This number is expected to grow to over 16 million by 2050, and the cost of caring for those with dementia in any setting will be significantly higher than caring for individuals without dementia.5 In addition to the rising numbers of people with dementia, the cost of their care is also increasing. In the United States, the 2013 cost of caring for those with dementia was estimated to be $220 billion.4,5 This is more than the cost of nursing home and home care combined. Insufficient care support structures at a community level are a major barrier to providing adequate care to homebound older adults with dementia and their caregivers. At present, about one quarter of the population in the U.S. participates in some form of caregiving.6,7 The caregivers of those with dementia currently number over 15 million in the U.S. and provide * Corresponding author. Tel.: þ1 757 683 6869. E-mail address: [email protected] (C. Fowler). 0197-4572/$ e see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2014.09.002
on average 20 hours of care a week. This equals 17 billion hours of unpaid care each year.4 While they provide an extremely valuable service, it is important to know that these caregivers have an increased risk of several significant health problems, including twice the risk of depression than age-matched non-caregivers.8 They also have increased levels of anxiety, anger, compromised physical health, significant sleep disturbance, and an impaired immune response.9e11 All of these problems, alone or in combination, cause increased caregiver stress. The most disturbing fact is the caregiving role itself has been shown to increase overall mortality independent of other risk factors.12,13 The hefty burden of caregiving can lead to decreased levels of health for caregivers and poor outcomes for dementia patients, such as decreased quality of life and early nursing home placement.14e16 The role of an informal caregiver, however, has become indispensable as our country continues to struggle with finding cost-effective ways to provide care to older adults with dementia and support their caregivers. Since many caregiver/care recipient dyads reside in a home setting, finding ways to provide adequate and comprehensive care in this environment will be an important task for health care service researchers and practitioners. For every person living in a nursing home, there are three others living at home with similar physical needs and disease burdens.17 Just like those residing in a nursing home, those cared for at home require frequent provider contact to maintain their health (9e12 visits a year).18 Despite the increase in the number of
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people cared for at home, the care infrastructure of community setting that can provide house calls or home care providers remain insufficient. There are only a small percentage of providers making these types of visits, and those providing them average less than once a week.19 Moreover, current caregiving literature rarely address the caregiver’s wellbeing related with the level of care support they received by the care provider for their care recipient. This study was designed to evaluate the impact of provider home visits on healthrelated quality of life measures between two groups of caregivers, those whose care recipients received home visits by providers (NP’s, MD’s) versus those who cared for individuals who did not. The specific aims of this study were: 1) investigate the differential effects of home visits by a care provider on the caregiver’s perceived quality of life and other health outcomes and, 2) evaluate the presence and frequency of several well-known barriers to obtaining care and, 3) capture caregivers’ thoughts about their current experience with a single open ended question. Methods Study design We employed a mixed method design that combined quantitative and qualitative approaches. In the quantitative part of study, we used a naturally occurring comparative descriptive design to evaluate the difference in health measures for two different groups of caregivers, those that had home provider visits for the individuals they cared for and those that did not. In addition to obtaining empirical data on the topic, we also collected qualitative data provided by caregivers in response to an open-ended question regarding their overall caregiving experience. The purpose of adding an open-ended question was to examine the perceptions and experiences of informal caregivers in order to build a more indepth understanding of issues related to the use of formal services, including care providers who can provide home visits. The study protocol with a plan to protect study participants was reviewed and approved by the institutional review board before any study participants were contacted. Sample The caregivers were recruited from several community sources including caregiver support groups from the Alzheimer’s Association; caregivers for those receiving services from the local Area Agency on Aging program; and private pay home care agencies. The private pay agencies provided sitters and aids; there was no requirement for a provider visit prior to service since these services were not billed to Medicare. A total of 63 people were referred to the research team. Among those, 55 caregivers of homebound older individuals with dementia met the eligibility criteria and were enrolled to the study. One caregiver declined to participate in the study after the study process was explained by the principal researcher. After contacting key personnel at each agency, a brief explanation of the purpose and description of the study was given and contact information was left for their clients; those who were interested in participating contacted the PI via the telephone. There were two groups: one who had utilized a provider for their care recipient within the past 12 months (n ¼ 34) and one who had not (n ¼ 21). The participants were placed into groups depending on their past 12 month history of provider access. Both groups of caregivers were caring for frail homebound individuals who had difficulty leaving their homes for health care visits. Those that had not utilized a provider in the past 12 months had no contact with a physician, nurse practitioner or physician assistant, either as a
home visit or in an office setting during that time period. The participants were recruited from several different cities in southeastern Virginia. The participants were mostly from urban or suburban areas; less than 10% were from rural areas. After a brief introduction and explanation of the study, only one caregiver declined to take part. Once the participants were deemed eligible, they were given informed consent; after obtaining consent, data was collected. Outcome measures The descriptive survey included the MOS Short Form Health Survey (SF-36), a demographic questionnaire and five specific questions about caregiving issues with the access and utilization of care support including the home visit service. The demographic questionnaire included age, gender, and relationship to the care recipient, education, income, and ethnicity. The Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) measures eight specific dimensions of health. The survey can be selfadministered by the participant or completed by an interviewer over the telephone.20 The SF-36 has been shown to be a reliable and valid tool for medical and psychiatric groups as well as adults across the age spectrum.21,22 There are two main components, the mental health domain and the physical health domain. Both of these domain summary scores are further divided into eight more subscales: the mental health domain consists of items measure of vitality, social functioning, role limitation due to emotional problems, and overall mental health. The physical health domain consists of physical functioning, role limitation due to physical problems, bodily pain, and general health perception. These eight individual dimensions measured on the SF-36 are weighted to produce a standardized score from 0 to 100 with a median of 50 in a healthy adult population.23 Each of the eight dimensions is scored separately. A greater score indicates better health measures, meaning better function and a higher level of overall health. The summary score of the mental health domain has been shown to be very useful in screening for psychiatric disorders, especially in detecting people with clinical depression or high risk people.24 In addition, a brief qualitative survey was administered, consisting of five questions about specific issues involving access to care, including the cost and availability of transportation, issues with behaviors and anxiety or pain. Finally, one open question was asked to all participants; “Do you have anything else you would like to add about your caregiving experience?” These questions were selected based on literature in order to identify critical needs of the target populations. Data analysis The SF-36 data were scored following recommendation from the original developer and used Quality Metric software. The psychometric analysis of the scale and descriptive analysis were conducted using SPSS. Demographic data were analyzed using descriptive statistics, including frequencies, mean, standard deviation and percentage. Chi-square, Fisher’s exact tests (categorical variables), or t-tests (continuous variables) were used to assess differences between caregiver with provider and with no provider on demographics. The mean comparisons were conducted by non-parametric analysis (ManneWhitney U mean rank test) due to a small sample size. Statistical significance was considered to be a p-value of <0.05. Internal consistency reliability of SF scale was (Cronbach’s alpha) was conducted on SF-36 scales. (Total SF-36 scores 0.924, Physical Health domain 0.873, and Mental Health domain 0.889.)
C. Fowler, M.T. Kim / Geriatric Nursing 36 (2015) 25e29 Table 1 Demographic data for caregiver participants. Variable
a b c d
Table 2 Comparison of self-reported health scores (SF-36) by two groups of caregivers.
Provider NO Provider YES Total (n ¼ 20) (n ¼ 35) n (%)
Agea (years) (mean SD) Gender Male Female Education High school graduate College graduate Ethnicity White Black Hispanic Incomea $25,000 $25,000e50,000 $50,000
27
Test p statistics
n (%)
64.9 11.60 61.9 9.50a 63.0 10.32 1.028b
0.309
0.146d 0.696 3 (15.0) 17 (85.0)
4 (11.4) 31 (88.6)
7 (12.7) 48 (87.3)
5 (25.0)
8 (22.9)
13 (23.6)
15 (75.0)
27 (77.1)
42 (76.4)
0.032c
0.857
0.343d 0.842 13 (65.0) 6 (30.0) 1 (5.0)
25 (71.4) 8 (22.9) 2 (5.7)
38 (69.0) 14 (25.5) 3 (5.5)
5 (25.0) 7 (35.0) 8 (40.0)
7 (20.6) 13 (38.2) 14 (41.2)
12 (22.2) 20 (37.0) 22 (40.7)
0.150c
Physical health summary Physical functioning Role-physical Bodily pain General health Mental health summary Vitality Social functioning Role-emotional Mental health
Provider NO (n ¼ 20)
Provider YES (n ¼ 35)
Mean SD
Mean SD
Z
Manne p Whitney U mean rank
40.96 10.17 50.47 9.69
3.257 169.0
0.001
41.49 12.11 50.90 9.02
3.413 162.0
0.001
31.54 42.43 44.99 37.71
11.80 11.22 12.33 14.20
45.68 50.38 51.68 46.91
10.63 9.58 9.84 11.58
3.911 2.560 2.022 2.235
132.5 210.5 240.5 228.0
0.000 0.010 0.043 0.025
40.79 33.99 32.92 42.90
11.49 15.48 14.27 14.37
48.87 47.54 45.70 48.84
11.74 10.53 10.74 10.98
3.243 3.295 1.440 3.257
219.5 179.5 274.5 169.0
0.017 0.001 0.001 0.150
0.928
One participant declined to answer. Independent t-test. Pearson Chi-square test. Fisher’s exact test.
Results Sociodemographic characteristics The caregivers’ mean age was 63 (10.32, range: 38e91 years) and the majority were women (n ¼ 48; 87%). Patient’s’ mean age was 70.9 (5.3; range, 60e89 years). The ethnic makeup of the study participants was fairly representative of the demographical profiles of our local community: 69% white, 25% black or African American, and 6% Hispanic. Twenty-two percent had completed high school, 42% had some college, and 35% were college graduates. Caregiver income was also evaluated, and the annual income was broken into three categories. Twenty-two percent reported annual incomes of up to $25,000; 36% reported annual incomes of between $25,000 and $50,000; and 40% reported annual incomes over $50,000. The relationship to the care recipient showed that the majority of caregivers were daughters, 51% (n ¼ 28); the next most prevalent relationship was wife with 20% (n ¼ 11) (see Table 1). There was no statistically significant group difference on major demographic variables such as age, income and education between caregivers who had utilized a provider for their care recipients compared to those who had not. Comparison of self-reported health scores (SF-36) by two groups of caregivers The comparative analysis (ManneWhitney U test) revealed a statistically significant difference between the two groups of caregivers on the physical health domain summary score of SF-36. The caregivers who had utilized a provider for their care recipient had significantly higher scores on the physical component domain when compared to caregivers who did not (50.8 vs. 40.96. p ¼ 0.002). Similarly, the summary score of mental health domain of SF-36 was higher on the group of caregivers who were able to utilize providers than ones from the groups without provider utilization (46.91 vs. 37.72). The further sub-domain analyses on both the physical and mental health domains also elucidated the differences between these two caregiver groups. When these individual measures were compared between the two groups of
caregivers, seven of the eight sub-domains showed a statistically significant difference between the two groups (p < 0.05) (Table 2). Mental health related quality of life The risk of depression was assessed by the Mental Component Summary (MCS) cutoff score from the SF-36. The MCS cutoff score is increasingly used as the tool has demonstrated high correlations with other depression screening measures.25e27 The results of the analysis revealed that more than half of caregivers (57%) without access to a provider for their care recipient were identified to be at risk for depression while a significantly lower proportion of caregivers with provider access for their care recipient (29%) were identified as at increased risk of depression. These scores are also much higher than population norm (12%).28 Those without access to a provider for their care recipient had consistently lower scores on the following sub-domains of the general physical and mental health domains: Physical functioning, role limitation due to physical problems, bodily pain and perceived general health, vitality, social functioning, and role limitation due to emotional problems. The only measure that did not show a statistically significant difference was the mental health sub-domain. Access and barriers to adequate utilization of health care services In order to obtain relevant information for understanding the care context of these caregivers and identify critical barriers to access and utilizing health care services, a brief survey was also administered, consisting of five questions about specific issues involving access to care, including the cost and availability of transportation, issues with behaviors and anxiety or pain of the care recipient. Table 3 summarizes the results of this survey as the percentage of caregivers who report some level of difficulty in each specific/ specified issue. The majority of caregivers without access to a home visit care provider reported that they had problems in getting the care recipient in and out of the car (95%), pain during transportation (76%), and unwanted behaviors of care recipients when leaving home (66%) while a lesser number of caregivers reported issues with the availability of transportation (47%) and cost (38%). Findings from qualitative analysis In addition to provide the relevant context in findings of our quantitative survey, one open question was asked to all participants; “Do you have anything else you would like to add about your caregiving experience?” The qualitative data obtained from
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C. Fowler, M.T. Kim / Geriatric Nursing 36 (2015) 25e29
A need of respite care
Table 3 Access and barriers to adequate utilization of health care services. Question
How much of a problem is finding transportation? How much of a problem is it to get your care recipient in and out of the car? How much of a problem is the cost of transportation? How much of a problem is pain during transportation? How much of a problem are unwanted behaviors when leaving the home for your care recipient?
Several caregivers stated that their own health/wellbeing declined while they are taking care of their elders.
Provider NO (n ¼ 20)
Provider YES (n ¼ 35)
Problem severity (%)
Problem severity (%)
47.0
20.0
95.0
76.0
38.0
17.0
76.0
35.0
(Participant E e a wife taking care of husband)
66.0
47.0
“I’m taking it one day at a time. We try to keep a sense of humor. I try not to think too much ahead of time. My daughter comes on Tuesdays to give me a break. You know, we’ve been married 51 years, he is my love and my life; even though it’s hard at times, I want to take care of him.”
a Percentage of participants who answered “slightly”, “moderately”, “quite a bit”, or “extremely”.
responses of the open-ended question was analyzed by following the principle of content analysis.29 The thematic analysis results showed specific barriers to obtaining optimal care for homebound elders with dementia from the caregiver’s perspective. Barriers to obtaining optimal care Transportation Many caregivers pointed out the difficulty of arranging transportation to care providers as a major barrier to obtaining optimal care for those homebound elders with dementia. “My wife’s immobility makes transportation to the doctor very difficult, even though the doctor’s office is connected to the apartment building via a covered walkway.” (Participant A e a husband caring for his wife who had not seen a provider in the past year) “She has had the same doctor for 8 years. There are some problems arranging transportation; she has to be transported in a wheelchair because she can’t really walk anymore because of the dementia.” (Participant B e a daughter caring for her mother) Difficulty in finding a care provider for homebound elders with dementia Several of the participants had difficulty even finding a provider for their care recipient. One daughter explained her search in detail: “It was difficult to find the physician care she needed. When she moved to the area, it was difficult to find a new doctor. It was very difficult to find a doctor that would follow her with her dementia, Medicare and Medicaid. I looked in June and July and finally found one in September.” (Participant C e a daughter caring for her mother) “[It’s difficult] finding competent people, the industry had changed. I got burnt out taking care of her. I saw her every day in the nursing home after working 10e12 hours a day. I worked until I got shingles in my eyes, now I’m pretty much blind. After I couldn’t work anymore, I brought her home with me. She had an ER visit for bronchitis, I had to call 911. We need quality and consistency of caregivers who do come to the home throughout the spectrum, aids, nurses and doctors.” (Participant D e a family caregiver caring for mother)
“I wish things could be better, we have difficulty traveling out of the house. A friend comes over to give me a day “off” every now and then. No other family is in the area. Being up at night is a problem. I have been treated for ovarian cancer and had chemotherapy. I’m feeling better now but I am still really tired. I can call friends and neighbors to help me when I have to run out. It’s hard to coordinate. It’s also hard for him to be separated from me.”
(Participant F e another wife taking care of husband)
Discussion The findings of this study revealed the caregivers of homebound elders with dementia suffered from low health-related quality of life measured by SF-36, well below the population norm.23 The caregivers without access to a provider for their care recipient scored much lower than their counterparts on both the mental and physical health domains of SF-36. In addition, the risk of depression was much more prevalent for the caregivers with no access to home care providers when compared with their counterpart caregivers with access to care providers who make home visits. Although the group difference [D ¼ 9.19, p ¼ 0.077] did not yield a statistical significance in the analysis, the trend was very clear. The failure of producing statistical significance was most likely related with the small sample size of our study (n ¼ 55). These findings are consistent with previous research.16,30e32 Our findings of qualitative data also provided revealing context of the daily struggles and pervasive care environment for the informal caregivers of homebound elders with dementia. These findings are also consistent with current literature about caregiver burden, risk for depression, and lack of provider visits for homebound older adults.7,10,14 This study has several limitations that should be taken into consideration when making any inference from our findings. First, the relatively small sample size with non-probability sampling method of this study has some limitation on the generalizability of the findings. In particular, we could not perform multivariate analyses to suggest a strong, predictive model that could be more useful to researchers and policy makers. Another significant limitation of this study was related to the inherent limitation of a cross sectional study, which was the difficulty in making strong, causal inference on the major findings of the study. For example, while we clearly demonstrated significant differences on the physical and mental health status between the two caregiver groups, we could not make a conclusive casual statement such as ‘not having access to home care provider “causes” compromised physical and mental health for them’. Another limitation is that we could not control several important covariates such as the health status of the caregivers, age and gender. Additionally, there might be a certain degree of self-selection bias imbedded in this study. As the median income level and education of the study sample were relatively high, it is possible that this study might not include the most vulnerable group of caregivers who have scarce resources and are even more isolated.
C. Fowler, M.T. Kim / Geriatric Nursing 36 (2015) 25e29
Despite the limitations of this study, the findings offer a few valuable insights to caregiving literature. The findings of this study reiterated the importance of a systematic care support system for the health of caregivers of homebound elders with dementia, a fast-growing and the most vulnerable patient population in US and across the world. This study has one rather simple but potentially useful conclusion. Having access to a medical provider able to perform home visits has a positive influence on the both physical and mental wellbeing of informal caregivers. These visits can be a vital component of the Affordable Care Act’s (ACA) desire to develop new patient care models, specifically programs for chronically ill Medicare beneficiaries (ACA, 2011).33 Using information obtained in this study can help point to some of the benefits of nurse practitioner directed homebased primary care teams that are to be promoted through the implementation of ACA. Given over 4 million people in the U.S. are currently homebound and that number is increasing, the role of informal caregivers is increasingly important to meet societal needs.34 The findings of this study also have a practical implication in designing a future community-based care support system for informal caregivers. Since the access to a primary care provider who makes home visits may significantly impact the caregiver’s wellbeing, future planning of care support systems must consider the integration of such a service as the key component of the system. It is clear from both quantitative and qualitative findings of our study that those services make such an impact on the caregiver’s wellbeing and their risk of developing depression.35e37 In conclusion, there is an increasing need for a communitybased care support system for informal caregivers including provider home visits. These home visits can potentially have direct benefits not only for people with dementia but their families as well, who will continue to provide the majority of care and support. Future study is warranted to complete comprehensive evaluations of the positive benefits of home visit practice on informal caregivers and the families dealing with dementia, as well as studies at the community and societal level which include cost effectiveness analysis. References 1. Butler R. Who Will Care for You? AARP Bulletin; 2007 January. 2. Chronic Care in America: A 21st Century Challenge. Princeton (NJ): Robert Wood Johnson Foundation; 1996. 3. Bernstein A, Remsburg R. Estimated prevalence of people with cognitive impairment: results from nationally representative community and institutional surveys. Gerontologist. 2007;47:350e354. 4. Alzheimer’s Association. Alzheimer’s Disease Facts and Figures. Available at: http:// www.alz.org/alzheimers_disease_facts_and_figures.asp#quickFacts; 2014. Cited December 28, 2013. 5. Fillit H, Hill J, Futterman R. Health care utilization and costs of Alzheimer’s disease: the role of co-morbid conditions, disease stage, and pharmacotherapy. Fam Med. 2002;34:528e535. 6. Hayshi J, DeCherrie L, Ratner E, et al. Workforce development in geriatric home care. Clin Geriatr Med. 2009;25:109e120. 7. Levine S, Boal J, Boling P. Home care. J Am Med Assoc. 2003;290:1203e1207. 8. Vitaliano P, Zhang J, Scanlan J. Is caregiving hazardous to one’s physical health? A meta-analysis. Psychol Bull. 2003;129:946e972.
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9. Fredman L, Doros G, Cauley J, et al. Caregiving, metabolic syndrome indicators and 1-year decline in walking speed: results of caregiver-SOF. J Gerontol A Biol Sci Med Sci. 2010;65:565e572. 10. Pinquart M, Sorensen S. Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2007;62:126e137. 11. Pinquart M, Söregnsen S. Gender differences in caregiver stressors, social resources and health: an updated meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2006;61:33e45. 12. Schultz R, Beach S. Caregiving as a risk factor for mortality: the caregiver health effects study. J Am Med Assoc. 1999;282:2215e2219. 13. Perkins M, Howard V, Wadley V, et al. Caregiving strain and all-cause mortality: evidence from the REGARDS study. J Gerontol B Psychol Sci Soc Sci. 2013;68:504e512. 14. Schulz R, Boerner K, Shear K, et al. Predictors of complicated grief among dementia caregivers: a prospective study of bereavement. Am J Geriatr Psychiatry. 2006;14:650e658. 15. Gaugler J, Kane J, Kane J, et al. Unmet care needs and key outcomes in dementia. J Am Geriatr Soc. 2005;53:2098e2105. 16. Mittleman M, Haley W, Clay O, Roth D. Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology. 2006;67:1592e1599. 17. American Academy of Home Care Physicians. About AAHCP. Available at: http://www.aahcp.org/displaycommon.cfm?an¼1; Cited November 28, 2012. 18. Beck R, Arizmendi A, Purnell C, Fultz B, Callahan C. House calls for seniors: building and sustaining a model of care for homebound seniors. J Am Geriatr Soc. 2009;57:1103e1109. 19. Peterson L, Landers S, Gunn P, Bazemore A. Trends in physician house calls to Medicare beneficiaries. J Am Board Fam Med. 2012;25:862e868. 20. Jenkinson C, Wright L, Coulter A. Criterion validity and reliability of the SF-36 in a population sample. Qual Life Res. 1994;3:7e12. 21. Pinquart M, Sörensen S. Spouses, adult children, and children-in-law as caregivers of older adults: a meta-analytic comparison. Psychol Aging. 2011;26: 1e14. 22. Hayes V, Morris J, Wolfe C, et al. The SF-36 health survey questionnaire: is it suitable for use with older adults? Age Aging. 1995;24:120e125. 23. Roth D, Wadley V, Haley W. Family caregiving and emotional strain: associations with quality of life in a large national sample of middle-aged and older adults. Qual Life Res. 2009;18:679e688. 24. Ware J. SF 36 health survey update. Spine. 2000;25:3130e3139. 25. Bergman S, Jacobsson L, Herrström P, Petersson I. Health status as measured by SF-36 reflects changes and predicts outcome in chronic musculoskeletal pain: a 3-year follow up study in the general population. Pain. 2004;108:115e123. 26. Walsh T, Homa K, Hanscom B, Lurie J, Sepulveda M, Abdu W. Screening for depressive symptoms in patients with chronic spinal pain using the SF-36 health survey. Spine J. 2006;6:316e320. 27. Elliott T, Renier C, Palcher J. Chronic pain, depression, and quality of life: correlations and predictive value of the SF-36. Pain Med. 2003;4:331e339. 28. Sharp L, Lipsky M. Screening for depression across the lifespan: a review of measures for use in primary care settings. Am Fam Physician. 2002;66:1001e 1009. 29. Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs. 2008;62: 107e115. 30. Mittelman M, Roth D, Clay O, et al. Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention. Am J Geriatr Psychiatry. 2007;15: 780e789. 31. Collins L, Swartz K. Caregiver care. Am Fam Physician. 2011;83:1309e1317. 32. Roche V. The hidden patient: addressing the caregiver. Am J Med Sci. 2009;337: 199e204. 33. Koh H, Sebelius K. Promoting prevention through the affordable care act. N Engl J Med. 2010;363:1296e1299. 34. Qiu W, Dean M, Liu T, et al. Physical and mental health of homebound older adults: an overlooked population. J Am Geriatr Soc. 2010;58:2423e2428. 35. Montgomery R, Kwak J, Kosloski K, et al. Effects of the TCAREÒ intervention on caregiver burden and depressive symptoms: preliminary findings from a randomized controlled study. J Gerontol B Psychol Sci Soc Sci. 2011;66:640e647. 36. Martire L, Lustig A, Schulz R, et al. Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychol. 2004;23:599e611. 37. Ducharme F, Lévesque L, Lachance L, et al. “Learning to become a family caregiver” efficacy of an intervention program for caregivers following diagnosis of dementia in a relative. Gerontologist. 2011;51:484e494.
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Feature Article
Home visits by care providers e Influences on health outcomes for caregivers of homebound older adults with dementia Christianne Fowler, DNP, RN, GNP-BC a, *, Miyong T. Kim, PhD b a b
Old Dominion University, 4608 Hampton Boulevard, Norfolk, VA 23529, USA University of Texas at Austin, School of Nursing, Austin, TX, USA
a r t i c l e i n f o
a b s t r a c t
Article history: Received 16 January 2013 Received in revised form 17 September 2014 Accepted 17 September 2014 Available online 22 October 2014
Homebound older adults benefit from provider home visits and there is an increasing need for these visits. A study was conducted to evaluate the effect of provider (MD, NP) visits on the caregivers of homebound older adults. Fifty-five caregivers were interviewed to determine any difference in health measures between those whose care recipients had access to a provider and those that did not. The participants completed the SF-36, questionnaires on demographics and access and one opened ended question. Analysis revealed statistically significant differences between the two groups of caregivers. The caregivers whose care recipients did not have access to a provider showed poorer health measures. Providers may have a positive impact on caregiver’s health as well as that of the homebound. Developing new and innovative ways to support caregivers while providing care for our patients will be even more important as the population ages and the numbers of available caregivers decrease. Ó 2015 Elsevier Inc. All rights reserved.
Keywords: Caregivers Dementia Homebound Health measures
Background Insufficient care support structures at a community level are a major barrier to providing adequate care to homebound older adults with dementia and their caregivers. At the same time, the availability of paid (formal) and unpaid (informal) caregivers are declining, and the pressure to control costs in health care has never been higher.1 In the United States, there are over 5 million people living with dementia, which translates to 1 in 9 of those over 65 years of age.2e4 This number is expected to grow to over 16 million by 2050, and the cost of caring for those with dementia in any setting will be significantly higher than caring for individuals without dementia.5 In addition to the rising numbers of people with dementia, the cost of their care is also increasing. In the United States, the 2013 cost of caring for those with dementia was estimated to be $220 billion.4,5 This is more than the cost of nursing home and home care combined. Insufficient care support structures at a community level are a major barrier to providing adequate care to homebound older adults with dementia and their caregivers. At present, about one quarter of the population in the U.S. participates in some form of caregiving.6,7 The caregivers of those with dementia currently number over 15 million in the U.S. and provide * Corresponding author. Tel.: þ1 757 683 6869. E-mail address: [email protected] (C. Fowler). 0197-4572/$ e see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2014.09.002
on average 20 hours of care a week. This equals 17 billion hours of unpaid care each year.4 While they provide an extremely valuable service, it is important to know that these caregivers have an increased risk of several significant health problems, including twice the risk of depression than age-matched non-caregivers.8 They also have increased levels of anxiety, anger, compromised physical health, significant sleep disturbance, and an impaired immune response.9e11 All of these problems, alone or in combination, cause increased caregiver stress. The most disturbing fact is the caregiving role itself has been shown to increase overall mortality independent of other risk factors.12,13 The hefty burden of caregiving can lead to decreased levels of health for caregivers and poor outcomes for dementia patients, such as decreased quality of life and early nursing home placement.14e16 The role of an informal caregiver, however, has become indispensable as our country continues to struggle with finding cost-effective ways to provide care to older adults with dementia and support their caregivers. Since many caregiver/care recipient dyads reside in a home setting, finding ways to provide adequate and comprehensive care in this environment will be an important task for health care service researchers and practitioners. For every person living in a nursing home, there are three others living at home with similar physical needs and disease burdens.17 Just like those residing in a nursing home, those cared for at home require frequent provider contact to maintain their health (9e12 visits a year).18 Despite the increase in the number of
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people cared for at home, the care infrastructure of community setting that can provide house calls or home care providers remain insufficient. There are only a small percentage of providers making these types of visits, and those providing them average less than once a week.19 Moreover, current caregiving literature rarely address the caregiver’s wellbeing related with the level of care support they received by the care provider for their care recipient. This study was designed to evaluate the impact of provider home visits on healthrelated quality of life measures between two groups of caregivers, those whose care recipients received home visits by providers (NP’s, MD’s) versus those who cared for individuals who did not. The specific aims of this study were: 1) investigate the differential effects of home visits by a care provider on the caregiver’s perceived quality of life and other health outcomes and, 2) evaluate the presence and frequency of several well-known barriers to obtaining care and, 3) capture caregivers’ thoughts about their current experience with a single open ended question. Methods Study design We employed a mixed method design that combined quantitative and qualitative approaches. In the quantitative part of study, we used a naturally occurring comparative descriptive design to evaluate the difference in health measures for two different groups of caregivers, those that had home provider visits for the individuals they cared for and those that did not. In addition to obtaining empirical data on the topic, we also collected qualitative data provided by caregivers in response to an open-ended question regarding their overall caregiving experience. The purpose of adding an open-ended question was to examine the perceptions and experiences of informal caregivers in order to build a more indepth understanding of issues related to the use of formal services, including care providers who can provide home visits. The study protocol with a plan to protect study participants was reviewed and approved by the institutional review board before any study participants were contacted. Sample The caregivers were recruited from several community sources including caregiver support groups from the Alzheimer’s Association; caregivers for those receiving services from the local Area Agency on Aging program; and private pay home care agencies. The private pay agencies provided sitters and aids; there was no requirement for a provider visit prior to service since these services were not billed to Medicare. A total of 63 people were referred to the research team. Among those, 55 caregivers of homebound older individuals with dementia met the eligibility criteria and were enrolled to the study. One caregiver declined to participate in the study after the study process was explained by the principal researcher. After contacting key personnel at each agency, a brief explanation of the purpose and description of the study was given and contact information was left for their clients; those who were interested in participating contacted the PI via the telephone. There were two groups: one who had utilized a provider for their care recipient within the past 12 months (n ¼ 34) and one who had not (n ¼ 21). The participants were placed into groups depending on their past 12 month history of provider access. Both groups of caregivers were caring for frail homebound individuals who had difficulty leaving their homes for health care visits. Those that had not utilized a provider in the past 12 months had no contact with a physician, nurse practitioner or physician assistant, either as a
home visit or in an office setting during that time period. The participants were recruited from several different cities in southeastern Virginia. The participants were mostly from urban or suburban areas; less than 10% were from rural areas. After a brief introduction and explanation of the study, only one caregiver declined to take part. Once the participants were deemed eligible, they were given informed consent; after obtaining consent, data was collected. Outcome measures The descriptive survey included the MOS Short Form Health Survey (SF-36), a demographic questionnaire and five specific questions about caregiving issues with the access and utilization of care support including the home visit service. The demographic questionnaire included age, gender, and relationship to the care recipient, education, income, and ethnicity. The Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) measures eight specific dimensions of health. The survey can be selfadministered by the participant or completed by an interviewer over the telephone.20 The SF-36 has been shown to be a reliable and valid tool for medical and psychiatric groups as well as adults across the age spectrum.21,22 There are two main components, the mental health domain and the physical health domain. Both of these domain summary scores are further divided into eight more subscales: the mental health domain consists of items measure of vitality, social functioning, role limitation due to emotional problems, and overall mental health. The physical health domain consists of physical functioning, role limitation due to physical problems, bodily pain, and general health perception. These eight individual dimensions measured on the SF-36 are weighted to produce a standardized score from 0 to 100 with a median of 50 in a healthy adult population.23 Each of the eight dimensions is scored separately. A greater score indicates better health measures, meaning better function and a higher level of overall health. The summary score of the mental health domain has been shown to be very useful in screening for psychiatric disorders, especially in detecting people with clinical depression or high risk people.24 In addition, a brief qualitative survey was administered, consisting of five questions about specific issues involving access to care, including the cost and availability of transportation, issues with behaviors and anxiety or pain. Finally, one open question was asked to all participants; “Do you have anything else you would like to add about your caregiving experience?” These questions were selected based on literature in order to identify critical needs of the target populations. Data analysis The SF-36 data were scored following recommendation from the original developer and used Quality Metric software. The psychometric analysis of the scale and descriptive analysis were conducted using SPSS. Demographic data were analyzed using descriptive statistics, including frequencies, mean, standard deviation and percentage. Chi-square, Fisher’s exact tests (categorical variables), or t-tests (continuous variables) were used to assess differences between caregiver with provider and with no provider on demographics. The mean comparisons were conducted by non-parametric analysis (ManneWhitney U mean rank test) due to a small sample size. Statistical significance was considered to be a p-value of <0.05. Internal consistency reliability of SF scale was (Cronbach’s alpha) was conducted on SF-36 scales. (Total SF-36 scores 0.924, Physical Health domain 0.873, and Mental Health domain 0.889.)
C. Fowler, M.T. Kim / Geriatric Nursing 36 (2015) 25e29 Table 1 Demographic data for caregiver participants. Variable
a b c d
Table 2 Comparison of self-reported health scores (SF-36) by two groups of caregivers.
Provider NO Provider YES Total (n ¼ 20) (n ¼ 35) n (%)
Agea (years) (mean SD) Gender Male Female Education High school graduate College graduate Ethnicity White Black Hispanic Incomea $25,000 $25,000e50,000 $50,000
27
Test p statistics
n (%)
64.9 11.60 61.9 9.50a 63.0 10.32 1.028b
0.309
0.146d 0.696 3 (15.0) 17 (85.0)
4 (11.4) 31 (88.6)
7 (12.7) 48 (87.3)
5 (25.0)
8 (22.9)
13 (23.6)
15 (75.0)
27 (77.1)
42 (76.4)
0.032c
0.857
0.343d 0.842 13 (65.0) 6 (30.0) 1 (5.0)
25 (71.4) 8 (22.9) 2 (5.7)
38 (69.0) 14 (25.5) 3 (5.5)
5 (25.0) 7 (35.0) 8 (40.0)
7 (20.6) 13 (38.2) 14 (41.2)
12 (22.2) 20 (37.0) 22 (40.7)
0.150c
Physical health summary Physical functioning Role-physical Bodily pain General health Mental health summary Vitality Social functioning Role-emotional Mental health
Provider NO (n ¼ 20)
Provider YES (n ¼ 35)
Mean SD
Mean SD
Z
Manne p Whitney U mean rank
40.96 10.17 50.47 9.69
3.257 169.0
0.001
41.49 12.11 50.90 9.02
3.413 162.0
0.001
31.54 42.43 44.99 37.71
11.80 11.22 12.33 14.20
45.68 50.38 51.68 46.91
10.63 9.58 9.84 11.58
3.911 2.560 2.022 2.235
132.5 210.5 240.5 228.0
0.000 0.010 0.043 0.025
40.79 33.99 32.92 42.90
11.49 15.48 14.27 14.37
48.87 47.54 45.70 48.84
11.74 10.53 10.74 10.98
3.243 3.295 1.440 3.257
219.5 179.5 274.5 169.0
0.017 0.001 0.001 0.150
0.928
One participant declined to answer. Independent t-test. Pearson Chi-square test. Fisher’s exact test.
Results Sociodemographic characteristics The caregivers’ mean age was 63 (10.32, range: 38e91 years) and the majority were women (n ¼ 48; 87%). Patient’s’ mean age was 70.9 (5.3; range, 60e89 years). The ethnic makeup of the study participants was fairly representative of the demographical profiles of our local community: 69% white, 25% black or African American, and 6% Hispanic. Twenty-two percent had completed high school, 42% had some college, and 35% were college graduates. Caregiver income was also evaluated, and the annual income was broken into three categories. Twenty-two percent reported annual incomes of up to $25,000; 36% reported annual incomes of between $25,000 and $50,000; and 40% reported annual incomes over $50,000. The relationship to the care recipient showed that the majority of caregivers were daughters, 51% (n ¼ 28); the next most prevalent relationship was wife with 20% (n ¼ 11) (see Table 1). There was no statistically significant group difference on major demographic variables such as age, income and education between caregivers who had utilized a provider for their care recipients compared to those who had not. Comparison of self-reported health scores (SF-36) by two groups of caregivers The comparative analysis (ManneWhitney U test) revealed a statistically significant difference between the two groups of caregivers on the physical health domain summary score of SF-36. The caregivers who had utilized a provider for their care recipient had significantly higher scores on the physical component domain when compared to caregivers who did not (50.8 vs. 40.96. p ¼ 0.002). Similarly, the summary score of mental health domain of SF-36 was higher on the group of caregivers who were able to utilize providers than ones from the groups without provider utilization (46.91 vs. 37.72). The further sub-domain analyses on both the physical and mental health domains also elucidated the differences between these two caregiver groups. When these individual measures were compared between the two groups of
caregivers, seven of the eight sub-domains showed a statistically significant difference between the two groups (p < 0.05) (Table 2). Mental health related quality of life The risk of depression was assessed by the Mental Component Summary (MCS) cutoff score from the SF-36. The MCS cutoff score is increasingly used as the tool has demonstrated high correlations with other depression screening measures.25e27 The results of the analysis revealed that more than half of caregivers (57%) without access to a provider for their care recipient were identified to be at risk for depression while a significantly lower proportion of caregivers with provider access for their care recipient (29%) were identified as at increased risk of depression. These scores are also much higher than population norm (12%).28 Those without access to a provider for their care recipient had consistently lower scores on the following sub-domains of the general physical and mental health domains: Physical functioning, role limitation due to physical problems, bodily pain and perceived general health, vitality, social functioning, and role limitation due to emotional problems. The only measure that did not show a statistically significant difference was the mental health sub-domain. Access and barriers to adequate utilization of health care services In order to obtain relevant information for understanding the care context of these caregivers and identify critical barriers to access and utilizing health care services, a brief survey was also administered, consisting of five questions about specific issues involving access to care, including the cost and availability of transportation, issues with behaviors and anxiety or pain of the care recipient. Table 3 summarizes the results of this survey as the percentage of caregivers who report some level of difficulty in each specific/ specified issue. The majority of caregivers without access to a home visit care provider reported that they had problems in getting the care recipient in and out of the car (95%), pain during transportation (76%), and unwanted behaviors of care recipients when leaving home (66%) while a lesser number of caregivers reported issues with the availability of transportation (47%) and cost (38%). Findings from qualitative analysis In addition to provide the relevant context in findings of our quantitative survey, one open question was asked to all participants; “Do you have anything else you would like to add about your caregiving experience?” The qualitative data obtained from
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A need of respite care
Table 3 Access and barriers to adequate utilization of health care services. Question
How much of a problem is finding transportation? How much of a problem is it to get your care recipient in and out of the car? How much of a problem is the cost of transportation? How much of a problem is pain during transportation? How much of a problem are unwanted behaviors when leaving the home for your care recipient?
Several caregivers stated that their own health/wellbeing declined while they are taking care of their elders.
Provider NO (n ¼ 20)
Provider YES (n ¼ 35)
Problem severity (%)
Problem severity (%)
47.0
20.0
95.0
76.0
38.0
17.0
76.0
35.0
(Participant E e a wife taking care of husband)
66.0
47.0
“I’m taking it one day at a time. We try to keep a sense of humor. I try not to think too much ahead of time. My daughter comes on Tuesdays to give me a break. You know, we’ve been married 51 years, he is my love and my life; even though it’s hard at times, I want to take care of him.”
a Percentage of participants who answered “slightly”, “moderately”, “quite a bit”, or “extremely”.
responses of the open-ended question was analyzed by following the principle of content analysis.29 The thematic analysis results showed specific barriers to obtaining optimal care for homebound elders with dementia from the caregiver’s perspective. Barriers to obtaining optimal care Transportation Many caregivers pointed out the difficulty of arranging transportation to care providers as a major barrier to obtaining optimal care for those homebound elders with dementia. “My wife’s immobility makes transportation to the doctor very difficult, even though the doctor’s office is connected to the apartment building via a covered walkway.” (Participant A e a husband caring for his wife who had not seen a provider in the past year) “She has had the same doctor for 8 years. There are some problems arranging transportation; she has to be transported in a wheelchair because she can’t really walk anymore because of the dementia.” (Participant B e a daughter caring for her mother) Difficulty in finding a care provider for homebound elders with dementia Several of the participants had difficulty even finding a provider for their care recipient. One daughter explained her search in detail: “It was difficult to find the physician care she needed. When she moved to the area, it was difficult to find a new doctor. It was very difficult to find a doctor that would follow her with her dementia, Medicare and Medicaid. I looked in June and July and finally found one in September.” (Participant C e a daughter caring for her mother) “[It’s difficult] finding competent people, the industry had changed. I got burnt out taking care of her. I saw her every day in the nursing home after working 10e12 hours a day. I worked until I got shingles in my eyes, now I’m pretty much blind. After I couldn’t work anymore, I brought her home with me. She had an ER visit for bronchitis, I had to call 911. We need quality and consistency of caregivers who do come to the home throughout the spectrum, aids, nurses and doctors.” (Participant D e a family caregiver caring for mother)
“I wish things could be better, we have difficulty traveling out of the house. A friend comes over to give me a day “off” every now and then. No other family is in the area. Being up at night is a problem. I have been treated for ovarian cancer and had chemotherapy. I’m feeling better now but I am still really tired. I can call friends and neighbors to help me when I have to run out. It’s hard to coordinate. It’s also hard for him to be separated from me.”
(Participant F e another wife taking care of husband)
Discussion The findings of this study revealed the caregivers of homebound elders with dementia suffered from low health-related quality of life measured by SF-36, well below the population norm.23 The caregivers without access to a provider for their care recipient scored much lower than their counterparts on both the mental and physical health domains of SF-36. In addition, the risk of depression was much more prevalent for the caregivers with no access to home care providers when compared with their counterpart caregivers with access to care providers who make home visits. Although the group difference [D ¼ 9.19, p ¼ 0.077] did not yield a statistical significance in the analysis, the trend was very clear. The failure of producing statistical significance was most likely related with the small sample size of our study (n ¼ 55). These findings are consistent with previous research.16,30e32 Our findings of qualitative data also provided revealing context of the daily struggles and pervasive care environment for the informal caregivers of homebound elders with dementia. These findings are also consistent with current literature about caregiver burden, risk for depression, and lack of provider visits for homebound older adults.7,10,14 This study has several limitations that should be taken into consideration when making any inference from our findings. First, the relatively small sample size with non-probability sampling method of this study has some limitation on the generalizability of the findings. In particular, we could not perform multivariate analyses to suggest a strong, predictive model that could be more useful to researchers and policy makers. Another significant limitation of this study was related to the inherent limitation of a cross sectional study, which was the difficulty in making strong, causal inference on the major findings of the study. For example, while we clearly demonstrated significant differences on the physical and mental health status between the two caregiver groups, we could not make a conclusive casual statement such as ‘not having access to home care provider “causes” compromised physical and mental health for them’. Another limitation is that we could not control several important covariates such as the health status of the caregivers, age and gender. Additionally, there might be a certain degree of self-selection bias imbedded in this study. As the median income level and education of the study sample were relatively high, it is possible that this study might not include the most vulnerable group of caregivers who have scarce resources and are even more isolated.
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Despite the limitations of this study, the findings offer a few valuable insights to caregiving literature. The findings of this study reiterated the importance of a systematic care support system for the health of caregivers of homebound elders with dementia, a fast-growing and the most vulnerable patient population in US and across the world. This study has one rather simple but potentially useful conclusion. Having access to a medical provider able to perform home visits has a positive influence on the both physical and mental wellbeing of informal caregivers. These visits can be a vital component of the Affordable Care Act’s (ACA) desire to develop new patient care models, specifically programs for chronically ill Medicare beneficiaries (ACA, 2011).33 Using information obtained in this study can help point to some of the benefits of nurse practitioner directed homebased primary care teams that are to be promoted through the implementation of ACA. Given over 4 million people in the U.S. are currently homebound and that number is increasing, the role of informal caregivers is increasingly important to meet societal needs.34 The findings of this study also have a practical implication in designing a future community-based care support system for informal caregivers. Since the access to a primary care provider who makes home visits may significantly impact the caregiver’s wellbeing, future planning of care support systems must consider the integration of such a service as the key component of the system. It is clear from both quantitative and qualitative findings of our study that those services make such an impact on the caregiver’s wellbeing and their risk of developing depression.35e37 In conclusion, there is an increasing need for a communitybased care support system for informal caregivers including provider home visits. These home visits can potentially have direct benefits not only for people with dementia but their families as well, who will continue to provide the majority of care and support. Future study is warranted to complete comprehensive evaluations of the positive benefits of home visit practice on informal caregivers and the families dealing with dementia, as well as studies at the community and societal level which include cost effectiveness analysis. References 1. Butler R. Who Will Care for You? AARP Bulletin; 2007 January. 2. Chronic Care in America: A 21st Century Challenge. Princeton (NJ): Robert Wood Johnson Foundation; 1996. 3. Bernstein A, Remsburg R. Estimated prevalence of people with cognitive impairment: results from nationally representative community and institutional surveys. Gerontologist. 2007;47:350e354. 4. Alzheimer’s Association. Alzheimer’s Disease Facts and Figures. Available at: http:// www.alz.org/alzheimers_disease_facts_and_figures.asp#quickFacts; 2014. Cited December 28, 2013. 5. Fillit H, Hill J, Futterman R. Health care utilization and costs of Alzheimer’s disease: the role of co-morbid conditions, disease stage, and pharmacotherapy. Fam Med. 2002;34:528e535. 6. Hayshi J, DeCherrie L, Ratner E, et al. Workforce development in geriatric home care. Clin Geriatr Med. 2009;25:109e120. 7. Levine S, Boal J, Boling P. Home care. J Am Med Assoc. 2003;290:1203e1207. 8. Vitaliano P, Zhang J, Scanlan J. Is caregiving hazardous to one’s physical health? A meta-analysis. Psychol Bull. 2003;129:946e972.
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