Community-dwelling Care Research Articles

Decision-making involvement and onset of cognitive impairment in community-dwelling older care recipients: a 2-year longitudinal study.

The decision-making of older adults and people with dementia is attracting more attention among healthcare professionals. While cognitive impairment has been examined as a factor related to decision-making, it can also be assumed that involvement in decision-making leads to the maintenance of cognitive function. This study examined the association of the decision-making process with the onset of cognitive impairment. We analyzed data from a 2-year longitudinal panel survey of community-dwelling care recipients aged ≥65 years in Japan. The sample included 406 participants who responded to both baseline and follow-up surveys, were cognitively intact at baseline, and had no missing cognitive impairment data regarding onset at follow-up. The status of decision-making involvement was assessed using a single item and classified into four categories: 'very involved,' 'less involved,' 'unclear about desired care,' and 'having no one to share the decision.' Among the participants (women, 65.0%; ≥75 years old: 68.2%), the incidence of cognitive impairment during the follow-up was 26.6%. Multivariable logistic regression showed that, compared with highly involved participants, those who lacked clarity about desired care were more likely to develop an onset of cognitive impairment (odds ratio: 5.49; 95% confidence interval: 1.63-18.54; P = 0.006). Even among cognitively intact care recipients, those who are not able to formulate their desired care may be at risk of cognitive decline. Therefore, support for the decision-making process, not limited to the final decision, is essential to improving the prognosis of community-dwelling care recipients.

PHOTOVOICE STUDY TO EXPLORE THE PHYSICAL DISABILITY EXPERIENCE IN OLDER ADULTS WITH MCI/EARLY DEMENTIA

Abstract Adults aging with mild cognitive impairment (MCI)/early dementia often experience physical disability, yet most research is focused on cognitive or physical disability rather than both. Understanding the experiences of this population and their care partners will help identify unmet needs and potential solutions. The purpose of this study is to explore perceptions of daily experiences relevant to aging in place in this population. We used human-centered design, critical ethnography, photos, written narratives, and semi-structured interviews with community-dwelling care partners (mean age: 63 years (SD= 7.48)) and older adults with MCI/early dementia and physical disability (mean age: 84.5 years (SD =2.60)) (total n= 9). Example participant insights included: preferred nonpharmacological remedies for pain, environmental constraints resulting in further isolation, systems of reminders relevant to the older adults’ preferences, and the importance of shared dyadic activities. This study demonstrates participants’ lived experiences and challenges faced and informs tailoring of an evidenced-based intervention.

INVOLVEMENT IN CARE DECISION-MAKING AND ADVERSE OUTCOME ONSET IN COMMUNITY-DWELLING CARE RECIPIENTS IN JAPAN

Abstract The involvement of older adults in care decision-making may enhance their daily life motivation and quality of life. Furthermore, it could contribute to their better prognosis in long-term care. We examined the association between decision-making involvement and the onset of adverse outcomes, such as institutionalization and death, among older adults under long-term care. This study used two-year longitudinal survey data of Japanese community-dwelling care recipients aged 65 and above. The participants were followed regarding the onset of institutionalization and deaths. The status of involvement in decision-making was assessed based on one item and the selection among the following response options: “very much involved,” “fairly involved,” “not very involved,” “never involved,” “unclarified wishes,” and “absence of person supporting decision-making.” A multivariable logistic regression analysis estimated the odds ratios (OR) and 95% confidence intervals (CI) for the onset of adverse outcomes, composite of institutionalization and death. A total of 707 participants with no severe cognition disabilities (MMSE>12) and no missing variables at the baseline were included and responded to the follow-up survey. At the baseline, 36.5% reported being very much involved in decision-making. The onset of adverse outcomes was observed in 17.5% of participants (institutionalization, 5.1%; death, 12.4%). Compared to those with very high involvement in decision making, those who were not involved were more likely to have adverse events, even after adjusting for covariates (OR=2.86 [95% CI: 1.21-6.76], p=0.016). Our findings show the importance of decision-making involvement in daily care regarding better prognoses in long-term care.

Informal caregivers' self-identified roles in facilitating health-promoting behaviours for weight management in community-dwelling care recipients living with spinal cord injury in the United States.

Health providers often focus on secondary conditions and spend less time prioritising overweight/obesity care. Informal caregivers are well positioned to facilitate health-promoting behaviours of healthy eating and physical activity among community-dwelling care recipients with spinal cord injury (SCI) for prevention and management of overweight/obesity. Literature has typically focused on caregiver adjustment post-injury and burden related to their roles in secondary condition care. The novel objective of this study was to describe informal caregivers' perspectives of their roles in facilitating health-promoting weight management behaviours, healthy eating and physical activity, for care recipients with SCI. This was a qualitative study that used semi-structured interviews with informal caregivers for data collection in 2019. Braun & Clarke's established thematic phases were used for analysis. Participants included informal caregivers of individuals with SCI living in the community (n=24). Caregivers identified eight themes to describe their role in facilitating weight management for care recipients. Themes included: (1) meal planning/shopping, (2) meal preparation/cooking, (3) using portion control, (4) serving/feeding, (5) helping the care recipient with physical activity and/or leisure activities, (6) mutually participating in weight management activities, (7) providing motivation and encouragement and (8) being an information liaison. In summary, informal caregivers have an intimate understanding of care recipients' needs and have insights on obstacles and enablers to health-promoting behaviours, making their involvement in facilitating weight management in individuals with SCI vital. Caregivers self-identified several significant roles for promoting weight management. This is especially valuable for conditions such as overweight/obesity for which prevention and treatment involve health-promoting behaviours that need consistent attention in the community setting. It is important to ensure that informal caregivers and care recipients have the information required in order to facilitate healthy eating and physical activity in persons with SCI and have opportunities for mutual dyadic participation when both partners are interested.

Pain-coping types among older community-dwelling care receivers with chronic pain

Objectives There is a lack of knowledge on coping with pain and sub-group specific pain-coping profiles among older home care receivers with chronic pain. To describe pain-coping strategies, identify subgroups based on cognitive and behavioral pain-coping strategies and pain-related psychological impairment and to compare these groups with regard to socio-demographic, medical, pharmacological and psychological characteristics. Method Data of 212 care receivers were examined using the German pain-coping questionnaire (FESV) to determine how they cope with pain. Subgroups were identified using hierarchic agglomerative cluster analysis, using Ward’s algorithm and squared Euclidean distance, and characterized using socio-demographic, medical, pharmacological and psychological parameters. Multinomial logistic regression was used to identify variables associated with the subgroups. Results Older care receivers apply cognitive and behavioral strategies to manage pain. Three subgroups were identified: Cluster 1 (25.9%) with good coping competences and little psychological impairment, Cluster 2 (40.1%) with poor coping competences and high psychological impairment, and Cluster 3 (34%) with good coping competences and high psychological impairment. Significant differences between the clusters were observed for age, pain intensity, pain-related interference, daily activities, depression and resilience. Logistic regression demonstrated that belonging to Cluster 2 was associated with the number of pain-reducing medications, depression and resilience. Belonging to Cluster 3 was significantly linked to daily activities, the number of pain medications, depression and the level of care required. Conclusion Differentiating between pain-coping profiles in the group of older care receivers with chronic pain necessitates target group-specific pain-oriented psychotherapeutic interventions, which can result in improved pain management.

Use of Home Care Services Reduces Care-Related Strain in Long-Distance Caregivers.

Prior work examining the role of older adult home care service use in alleviating strain in family caregivers has resulted in contradictory findings. However, prior research has been entirely limited to caregivers who live within close geographical proximity to their care recipients. Long-distance caregivers are a unique caregiving subgroup that has remained understudied. Guided by the stress process model, this study examined if the association between primary caregiving stressors (the care recipient's functional and cognitive status) and secondary stressors (perceived role strains related to work and to other family responsibilities) in long-distance caregivers was mediated by the care recipient's utilization of home care services. The sample included 166 long-distance caregivers in the United States who provide and manage care to a community-dwelling care recipient living 2 or more hours away. Participants reported on their care recipient's cognitive and functional status, perceived interference of caregiving with work and other family responsibilities, and the care recipient's use of home care services. Path analyses show that home care use by the care recipient fully mediated the association between care recipients' functional impairment and caregiver strains (work and family). Furthermore, home care use partially mediated the effects of care recipients' cognitive impairment on caregiver strains. Results indicate that the care recipient's home care service utilization may serve as a protective factor against care-related strain in long-distance caregivers. These findings can be used to inform intervention efforts focused on a family-centered care approach that can be specifically tailored to long-distance caregivers.

A-05 Dyadic Influence on Levels of Depression in Individuals with Alzheimer’s Disease

Abstract Objective Two people who are significantly linked, such as in a husband and wife relationship, are known as a dyad. Dyadic units are helpful to look at as members influence the function of one another. This study looks at families where one member is the caregiver and the other has Alzheimer’s disease and receives care (labeled here as Alzheimer’s disease care recipient or CR). Symptoms of Alzheimer’s include cognitive and functional impairment, social withdrawal, impaired judgment, and mood changes. Notably, there is little research examining how Alzheimer’s dyads influence one another’s level of depression. This study examines how the influence of cognitive and psychosocial variables from the dyad impact depression severity in CRs. Method Archival data of 670 Alzheimer’s disease community-dwelling care recipients from several major cities throughout the United States from the Resources for Enhancing Alzheimer’s Caregivers Health II (REACH II) study was analyzed. The measures included: Mini Mental State Examination (MMSE), Revised Memory and Behavior Problems Checklist (RMBPL), Activities of Daily Living/Instrumental Activities of Daily Living (IADL), Caregiver Burden, Social Support, and Positive Aspects of Caregiving. Results A multiple regression found that caregiver burden (β = 0.34, p < .001), IADL (β = 0.14, p < .001), and positive aspects of caregiving (β = 0.10, p = .02) significantly predicted CR depression ratings. Conclusion Increased positive aspects of caregiving, caregiver burden, and higher levels of CR functional decline were associated with significantly increased levels of depression in CRs. Increased CR depression could correspond with higher levels of awareness during earlier stages of the disease process regarding their impairment and impact on their caregiver.

Care Recipient Concerns About Being a Burden and Unmet Needs for Care.

BackgroundDisabled older adults’ needs for help with daily activities sometimes go unmet with potentially long-term negative consequences for health and well-being.ObjectivesTo examine the relationship between care recipient unmet needs and (1) concerns about being a burden; (2) perceptions of caregiver burden; and (3) and caregiver self-reports of burden in community-dwelling care recipient–caregiver dyads.Research Design and MethodsTelephone surveys with 196 linked caregiver–care recipient dyads from the 2017 Pittsburgh Regional Caregiver Survey. Of 376 caregivers who gave initial permission to contact the recipient (February–July), 262 caregivers were recontacted and gave permission to attempt a care recipient survey (September–October; n = 196 completed; 74.8% response rate). In addition to the burden measures, we controlled for several covariates, including disability level, receipt of paid help, and care recipient and caregiver sociodemographics.ResultsSlightly more than one fourth (27.2%) of care recipients were “very concerned” about being a burden, and 43.6% were “somewhat concerned.” Care recipient concerns about being a burden (exp(B) = 1.71, 95% confidence interval [CI] exp(B) [1.15, 2.54]); and caregiver self-reported burden (exp(B) = 1.82, 95% CI exp(B) [1.17, 2.85]) were independent predictors of more care recipient unmet needs. Recipient perceptions of caregiver burden were not independently predictive. Care recipients with higher disability levels, those without paid help, and those whose caregiver was not a spouse/child also reported more unmet needs. The impact of burden on unmet needs was stronger for instrumental activities of daily living/mobility needs than for activities of daily living needs.Discussion and ImplicationsPotential interventions to reduce unmet needs should take a dyadic approach, focusing on reducing both care recipient perceptions of being a burden and caregiver experienced burden.

Medical Care Activities Among Spouses of Older Adults With Functional Disability: Implications for Caregiving Difficulties and Gains

Spouses of older adults with functional disability often provide help with their partner's medical care. Yet little is known about the implications of these activities for spouses' caregiving experiences. We examined how spouses' medical care activities are linked to both positive and negative aspects of caregiving (difficulties and gains), and whether these associations vary by their age, gender, or education. Retrospective analysis of data from the 2011 National Health and Aging Trends Study and National Study of Caregiving cross-sectional studies. Caregivers and care recipients/proxies were interviewed by telephone at home. Nationally representative U.S. sample of 345 spousal caregivers and their community-dwelling care recipients aged 65 years and older. Caregivers' self-reported sociodemographics, care activities, health conditions, well-being, and support resources. Care recipients (or proxies) reported on their health conditions and dementia status. A higher number of health system interaction tasks (e.g., making appointments) were significantly associated with greater emotional caregiving difficulties, whereas a higher number of medical/nursing tasks (e.g., giving shots/injections) were significantly linked to greater caregiving gains. A higher number of medical/nursing tasks were also significantly associated with greater physical difficulties for caregiving wives and spouses with less education. Medical care activities may have both positive and negative consequences for spousal caregivers, which depend partly on sociodemographics. This study underscores the importance of ensuring that spouses have the resources and support needed to provide complex care to their partners.

Pilot Test of a New Personal Health System Integrating Environmental and Wearable Sensors for Telemonitoring and Care of Elderly People at Home (SMARTA Project)

Background: The increase in life expectancy is accompanied by a growing number of elderly subjects affected by chronic comorbidities, a health issue which also implies important socioeconomic consequences. Shifting from hospital or community dwelling care towards a home personalized healthcare paradigm would promote active aging with a better quality of life, along with a reduction in healthcare-related costs. Objective: The aim of the SMARTA project was to develop and test an innovative personal health system integrating standard sensors as well as innovative wearable and environmental sensors to allow home telemonitoring of vital parameters and detection of anomalies in daily activities, thus supporting active aging through remote healthcare. Methods: A first phase of the project consisted in the definition of the health and environmental parameters to be monitored (electrocardiography and actigraphy, blood pressure and oxygen saturation, weight, ear temperature, glycemia, home interaction monitoring - water tap, refrigerator, and dishwasher), the feedbacks for the clinicians, and the reminders for the patients. It was followed by a technical feasibility analysis leading to an iterative process of prototype development, sensor integration, and testing. Once the prototype had reached an advanced stage of development, a group of 32 volunteers - including 15 healthy adult subjects, 13 elderly people with cardiac diseases, and 4 clinical operators - was recruited to test the system in a real home setting, in order to evaluate both technical reliability and user perception of the system in terms of effectiveness, usability, acceptance, and attractiveness. Results: The testing in a real home setting showed a good perception of the SMARTA system and its functionalities both by the patients and by the clinicians, who appreciated the user interface and the clinical governance system. The moderate system reliability of 65-70% evidenced some technical issues, mainly related to sensor integration, while the patient's user interface showed excellent reliability (100%). Conclusions: Both elderly people and clinical operators considered the SMARTA system a promising and attractive tool for improving patients' healthcare while reducing related costs and preserving quality of life. However, the moderate reliability of the system should prompt further technical developments in terms of sensor integration and usability of the clinical operator's user interface.

Effects of Prescription Drug Reduction on Quality of Life in Community-Dwelling Patients with Dementia.

Due to the use of multiple drugs and prevalence of diminished cognitive function, community-dwelling elderly individuals are more likely to have drug-related issues. We examined changes in quality of life (QOL) and activities of daily living (ADL) 3 months and 6 months after reducing drug use of dementia patients who had newly begun community-dwelling care. Prescription drug use was reduced in the intervention group, whereas the non-intervention group continued their regimen or began using additional drugs. QOL and ADL were assessed with the Japanese version of the EQ-5D and the Barthel Index, respectively. Subjects were 32 individuals aged ≥65 years who had begun community-dwelling between March and July 2014 and had received approval for long-term care insurance. On average, the intervention group (n = 19) stopped using 2.6 prescription drugs. After 6 months, the differences in the QOL and ADL scores in the intervention group were -0.03 ± 0.29 and 6.32 ± 18.6, respectively, while the differences in the QOL and ADL scores in the non-intervention group (n = 13) were -0.13 ± 0.29 and -2.69 ± 23.7, respectively. In the intervention group, ADL scores were significantly increased by 14.0 ± 11.1 6 months after reduced benzodiazepine use. QOL was maintained with reduced drug use, while ADL score was slightly increased. In addition, the reduction of benzodiazepine use significantly increased ADL. In order to reduce polypharmacy among community-dwelling elderly patients, it is necessary to create an opportunity for pharmacists to re-examine their prescriptions.

Do Community and Caregiver Factors Influence Hospice Use at the End of Life Among Older Adults With Alzheimer Disease?

Hospice is an underused service among people with Alzheimer disease. This study used the Hospice Use Model to examine community, care recipient, and caregiver characteristics associated with hospice use before death among 145 community-dwelling care recipients with Alzheimer disease and their caregivers. Secondary analysis using logistic regression modeling indicated that older age, male gender, black race, and better functional health of care recipients with Alzheimer disease were associated with a decreased likelihood of using hospice (model χ25 = 23.5, P = .0003). Moreover, care recipients recruited from an Alzheimer clinic were more likely to use hospice than those recruited from adult day-care centers. Caregiver factors were not independent predictors of hospice use. However, there was a significant interaction between hours of care provided each week and recruitment site. Among care recipients from the Alzheimer clinic, the probability of hospice use increased as caregiving intensity increased. This relationship was reversed in care recipients from day-care centers. Results suggest that adult day-care centers need to partner with hospice programs in the community. In conclusion, care recipient and community service factors influence hospice use in individuals with Alzheimer disease.

Health care decision-making of persons with dementia

This descriptive study examined the health care decision-making (HCDM) process of 20 community-dwelling care receivers (CR) with mild to moderate dementia and their family caregivers (CG). We conducted semi-structured interviews with the CR, focusing on their HCDM experiences. Additional data were obtained from the quantitative portion of the larger study. Major factors in the HCDM of the CRs were: symptoms, resources, function, trust in the health care system, and reliance on family. Poor congruence between CR and CG choices on treatment was analyzed in light of the qualitative findings. We found that older adults with mild to moderate dementia can participate in the HCDM process, make choices, and provide reasonable explanations for their choices. We concluded that disagreement on treatment choices in family dyads may be more fully explained by using a human needs-based model, as opposed to attributing care receivers’ choices to cognitive status alone.

Falls of the elderly are associated with burden of caregivers in the community

Little attention has been paid to the impact on caregivers who provide care to a family member who has falls. The purpose of the current study was to determine whether falls of care recipients are associated with caregivers' burden. A cross-sectional study of 1874 community-dwelling care recipients and 1478 caregivers was conducted. We examined the characteristics of care recipients and caregivers, including demographic characteristics, depressive mood as assessed by the Geriatric Depression Scale (GDS-15), the basic activities of daily living (bADL), fall history in the past 6 months, and physician-diagnosed chronic diseases to determine whether there was an association with caregivers' burden as assessed by the Zarit Burden Interview (ZBI). A total of 567 care recipients (30.3%) had a history of falls in the past 6 months. The mean ZBI score of caregivers with falls was significantly higher than that of caregivers without falls. There were negative correlations between the ZBI score and recipient bADL score and positive correlations between the ZBI score and GDS-15 scores of the recipient and caregiver, the level of severity of dementia, and the Charlson comorbidity index. Male recipient, fall history, behavioral disturbance, and dementia had significantly higher ZBI scores than those of controls. The stepwise multiple regression analyses found that the GDS-15 score of caregivers and recipients, level of severity of dementia, bADL score, and fall history were independently associated with the ZBI score. Among the community-dwelling frail elderly, falls are associated with caregiver burden even when controlling for various possible confounding factors.

A Dyadic Remediation Program for Care Recipients with Dementia

A cognitive remediation intervention was tested for its effect on functional outcomes of older care recipients with the diagnosis of dementia of the Alzheimer's type. The 78 community-dwelling care recipients were assessed on cognitive and behavioral functioning and randomly assigned to one of three conditions. Care recipients were expected to benefit most from active cognitive stimulation training as compared to placebo (passive) activity or wait-list control conditions. Following each weekly instruction session, the intervention was executed in the home by the family caregiver. Care recipients in the experimental group improved in cognitive and behavioral performance with treatment, but returned to former level of functioning by the 9th month. In contrast, the control group declined, while the placebo group remained static on these variables. These findings support the viability of remediation interventions in dementia despite the trajectory of cognitive decline.