Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement.

BACKGROUND: Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research. METHODS: A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results. RESULTS: The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted. CONCLUSIONS: Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons' ownership of the research process. TRIAL REGISTRATION: Prospero 2021: CRD42021253736.

Depression in nursing home residents and its correlation with meaning of family involvement and depression of family.

OBJECTIVES: This study aimed to investigate the relationship between depression in older nursing home residents and family caregivers' (FCGs) depressive status and reasons for involvement with residents. DESIGN: This study employed a cross-sectional design. SETTING: Eight nursing homes in northern Taiwan. PARTICIPANTS: A total of 139 older resident-FCG pairs were recruited. MEASUREMENTS: Depression was measured with the Geriatric Depression Scale-Short Form for nursing home residents and the Center for Epidemiologic Studies Depression Scale-Short Form for family members. Depression and demographic data were collected with face-to-face interviews. The meaning ascribed to caregivers' nursing home visits was calibrated using the Family Meaning of Nursing-Home Visits scale. Multiple logistic regression was used to understand the factors related to residents' depressive symptoms. RESULTS: Depressive symptoms were present in 58.3% of the nursing home residents (n = 81). Depressive status of family members (Chi-square = 1.46, p = 0.23) or family's visiting frequency (Chi-square = 1.64, p = 0.44) did not differ between residents with or without depressive symptoms. Factors associated with an increased risk of residents having depressive symptoms were age, self-perceived health status, and having a caregiver motivated to visit to assuage their guilt. CONCLUSIONS: Visiting a family member to assuage their guilt was the only caregiver variable associated with depressive symptoms for nursing home residents. This finding suggests that developing interventions to improve personal relationships between nursing home residents and family members might facilitate the emotional support of caregivers and psychological support for older nursing home residents in Taiwan.

Neighbourhood socio-economic status and positive affectivity among older residents in Germany: a cross-sectional analysis with data from the Heinz Nixdorf Recall Study.

BACKGROUND: Physical and social neighbourhood characteristics can vary according to the neighbourhood socio-economic status (SES) and influence residents' perceptions, behaviours and health outcomes both positively and negatively. Neighbourhood SES has been shown to be predictive of mental health, which is relevant for healthy ageing and prevention of dementia or depression. Positive affectivity (PA) is an established indicator of mental health and might indicate a positive emotional response to neighbourhood characteristics. In this study, we focussed on the association of neighbourhood SES with PA among older residents in Germany and considered social integration and environmental perceptions in this association. METHODS: We used questionnaire-based data of the ongoing population-based Heinz Nixdorf Recall Study for our cross-sectional analysis, complemented by secondary data on social welfare rates in the neighbourhood of residents' address. PA was assessed using the Positive and Negative Affect Schedule (PANAS) in 2016. Linear regression models were performed to estimate the associations and adjusted for socio-demographic variables. RESULTS: Higher social welfare rates were associated with lower PA scores. The strongest negative association from the crude model (b = -1.916, 95%-CI [-2.997, -0.835]) was reduced after controlling for socio-demographic variables (b = -1.429, 95%-CI [-2.511, -0.346]). Social integration factors (b = -1.199, 95%-CI [-2.276, -0.121]) and perceived environmental factors (b = -0.875, 95%-CI [-1.971, 0.221]) additionally diminished the association of social welfare rates with PA in the full model (b = -0.945, 95%-CI [-2.037, 0.147]). CONCLUSION: Our results suggest that neighbourhoods have an influence on the occurrence and the extent of PA. Public health interventions that address socio-economic disadvantage in the neighbourhood environment could be an effective and far-reaching way to reduce the risk of depression and depressive symptoms due to low PA in older residents.

Pain prevalence among residents living in nursing homes and its association with quality of life and well-being.

BACKGROUND: Pain is common and often more complex to assess among nursing homes residents with cognitive impairments. Thus, more research is needed of different pain assessment methods in elderly care and how these assessments outcomes are related to quality of life, as there mostly should be a negative relationship. There is a risk that pain are under diagnosed among persons with cognitive impairment. AIM: The aim was to describe and compare pain prevalence among nursing home residents (1) using different pain assessment methods (2) in relation to cognitive status and to (3) examine associations between pain and quality of life or well-being. METHODS: A cross-sectional correlational design was used, participants were 213 nursing home residents and data were collected through interviews using standardised protocols. Instrument used were Katz index of ADL, Mini-Mental-State-Examination, Quality of Life in Late-Stage Dementia scale, WHO-5 well-being index, Numeric Rating Scale and Doloplus-2 scale. RESULTS: The results showed high pain prevalence, but no significant difference based on cognitive level. Pain classification at the individual level varied somewhat when different instruments are used. The results indicated that use of a single-item proxy-measure for pain tends to show higher pain prevalence and was not statistically significant related to quality of life. The relationship with quality of life was statistically significant when self-rated pain instruments or multi-component observation were used. CONCLUSIONS: The study shows that it is difficult to estimate pain in residents living at nursing homes and that it continues to be a challenge to solve. Self-rated pain should be used primarily to assess pain, and a multi-component observation scale for pain should be used when residents are cognitively impaired. Both self-rated pain and multi-component observation also support the well-known link between pain and quality of life. Single-item proxy assessments should only be used in exceptional cases.

Hydration Interventions for older people living in residential and nursing care homes: overview of the literature.

INTRODUCTION: Care home populations experiencing high levels of multi-morbidity and dementia require support from caregivers to meet their hydration requirements. This article provides an overview of literature related to hydration interventions and highlights gaps in knowledge. SOURCES OF DATA: This paper draws on UK-focused literature from Applied Social Sciences Index and Abstracts (ASSIA), CINAHL, Medline, Proquest Hospital Premium Collection, Cochrane Library and RCN databases on hydration interventions for older people living with multi-morbidity and dementia in care homes. AREAS OF AGREEMENT: Fluid intake is too low in care home residents, and no single hydration intervention is effective in addressing the complex problems that older residents present. AREAS OF CONTROVERSY: There is a lack of consensus about how much fluid an older person should consume daily for optimum health. There is also lack of agreement about what interventions are effective in supporting individuals with complex physical and cognitive problems to achieve daily fluid intake targets. GROWING POINTS: To improve hydration care for residents, care home teams should be competent in the delivery of hydration care, and work closely with integrated multi-professional healthcare specialists to provide proactive case management. AREAS TIMELY FOR DEVELOPING RESEARCH: There is a need for understanding of what hydration practices and processes are effective for care home residents and including these in multi-component interventions.

Efficacy of a horticultural activity program for reducing depression and loneliness in older residents of nursing homes in Taiwan.

Promoting psychological health in older populations is important. This study evaluated a horticultural activity program for reducing depression and loneliness in older residents of nursing homes in Taiwan. A convenience sample of 150 older residents of three nursing homes were recruited and randomly assigned to either an experimental group or a control group. The experimental group (n = 75) participated in an 8-week horticultural activity program. The control group (n = 75) received routine care. Generalized estimating equations analyses revealed significant time by treatment interaction effects for depression (p < .001) and loneliness (p < .001). This study provides a reference for improving psychological health in older people.

Does geriatric nursing staff burnout predict well-being of LTC residents?

Nursing staff in residential settings are exposed to a large number of stressors. This study examined the relationship between geriatric nursing staff (GNS) burnout and the well-being of residents in long-term care (LTC) facilities. Data were obtained concerning 590 older residents who were served by 315 GNS in 172 LTC facilities in Taiwan, using multilevel modeling. The depersonalization (DP) dimension of burnout in GNS was consistently related to various resident well-being outcomes. Higher DP among GNS was associated with lower residential satisfaction and perceived quality-of-life, as well as more depressive symptoms among older LTC residents. The findings support the claim that DP among GNS has a greater role in determining LTC resident well-being than other dimensions of burnout. Efforts should be made to mitigate the emergence of DP among GNS. Support and education are also needed to enable GNS to foster positive interactions and relationships with LTC residents.

Occupation-based differences in shared perceptions of older resident needs within multidisciplinary care teams: a cross-sectional study of care workers, nurses, and therapists linked to older residents.

[Purpose] To examine whether the needs of older individuals are commonly understood by multidisciplinary team members at elderly care facilities. [Subjects and Methods] A questionnaire survey with care workers, nurses, and therapists linked to residents and structured interviews with residents were conducted at eight facilities in Japan. The questionnaire comprised 25 items regarding basic activities of daily living, instrumental activities of daily living (IADL), environment and lifestyle (EL), and emotion. [Results] The data of 88 residents (83.0% female, 86.4% aged ≥75 years) and 125 staff members (63 care workers, 36 nurses, and 26 therapists) were analyzed. Perceptions regarding the subjective needs of residents differed significantly by occupation with regard to pace of eating, pace of dressing, and freedom to brush at any time; shaving or putting on make-up; personal space, role performance, and health exercises; and feeling good. All three occupations underestimated the subjective needs of residents for household chores. [Conclusion] Staff members had insufficient understanding of the subjective needs of residents, with a tendency to underestimate IADL and EL needs. Perceived subjective needs also differed by occupation. Sharing the understanding of subjective needs of older individuals within multidisciplinary care teams is desired.

The impact of income level on skeletal muscle health in rural Chinese older residents: a study of mediating effects based on dietary knowledge.

China's rural residents have basically solved the problem of subsistence, but due to aging, the prevalence of sarcopenia (abbreviated as sarcopenia) has been increasing year by year, especially the skeletal muscle health of the rural older residents has not been sufficiently paid attention to, so analyses of the impact of income level on the skeletal muscle health of the older people in rural areas of China are of great practical significance. Based on the annual data of the China Health and Nutrition Survey (CHNS) in 2006, 2009, and 2011, we introduced the mediator variable of dietary knowledge and used the Probit model regression, mediation effect model, and instrumental variable regression to assess the skeletal muscle health status of the rural older people in China and explore the mechanism of the influence of the income level on the skeletal muscle health of the rural older residents in China. The primary objectives of this study were to evaluate the impact of income level on the skeletal muscle health status of older adults living in rural areas of China and to investigate the underlying mechanisms. By analyzing the findings of this study, our aim is to establish a correlation between the economic status and skeletal muscle health of older adults in rural communities, as well as elucidate the influence of income level and dietary knowledge on their skeletal muscle health. Through the attainment of these objectives, we hope to provide valuable insights and recommendations for enhancing skeletal muscle health among the rural older population in China. Based on our research findings, it can be inferred that there was a significant association between the financial status of rural older adults and their skeletal muscle health. Additionally, the prevalence of sarcopenia was lower among individuals with higher income levels, and there was a negative correlation between the prevalence of sarcopenia and the level of dietary knowledge among rural older individuals. The knowledge of dietary knowledge level of rural older people plays a mediating role in the income level and the prevalence of sarcopenia. Moreover, with the change in income level and the increase in age, the change in skeletal muscle health status showed obvious heterogeneity, in which the effect on the relatively younger (65-70 years old) samples was greater. Therefore, sustained income growth remains an effective way to improve the skeletal muscle health of older rural residents. At the same time, improving dietary knowledge and dietary quality among the older people is important in preventing a decline in muscle strength and physical function and in preventing the onset of sarcopenia.

The experience of eating for older nursing home residents with dysphagia: A qualitative descriptive study.

BACKGROUND: Understanding the experience of eating for nursing home residents with dysphagia is essential for developing effective and holistic compensatory intervention programmes for older adults with dysphagia. However, there is a lack of studies on the experience of eating for older adults with dysphagia, especially for individuals in Asian cultures. OBJECTIVES: This study aimed to understand the experience of eating for older nursing home residents who have difficulty swallowing (dysphagia), which is often a problem for this population. METHODS: This qualitative descriptive study recruited older nursing home residents with dysphagia from facilities in central Taiwan. Residents were recruited by purposive sampling. Data were collected through individual in-depth semistructured face-to-face interviews. Interviews were audio-recorded and transcribed interview data were analysed with content analysis. RESULTS: A total of 20 residents participated in the study; the mean age was 78.7 years (standard deviation = 8.54 years); male and female residents were equally represented. The main core theme describing the experience of eating for nursing home residents with dysphagia was irregular coughing, which often occurred spontaneously. Three subthemes described how residents responded: making adjustments to eating and swallowing, receiving assistance from NH staff and fear of eating. CONCLUSIONS: Our findings can serve as an evidence-based reference for clinical care aimed at nursing home residents with dysphagia. Support programmes that provide safe swallowing skills and emotional support for managing dysphagia are recommended. IMPLICATIONS FOR PRACTICE: Nursing home residents with dysphagia should receive interventions focussed on self-supporting care, training in swallowing skills and emotional support.