Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

AN EXPLORATORY SECONDARY DATA ANALYSIS OF THE IMPACT OF HETEROGENEITY ON ASSISTIVE TECHNOLOGY TO REDUCE SAFETY AND WANDERING RISKS FOR PEOPLE WITH DEMENTIA LIVING AT HOME

Introduction: There is an acknowledged gap between the potential and achieved benefit of assistive technology in the care of people with dementia. In order to make better use of this resource, this research aimed to investigate the heterogeneity of population characteristics of people with dementia living at home who have safety and wandering risks and how this is related to assistive technology recommended and installed to meet their needs. Methods: This research consisted of two studies; a systematic review and secondary data analysis. Initially, published quantitative data describing the needs of people with dementia living at home was subjected to meta-analysis in order to explore the prevalence of needs reported by people with dementia and their caregivers and associated heterogeneity. Following univariate analyses, ordinal models were developed using secondary data which described the needs of people with dementia, and their level of wandering and safety risk, to explore the relationship between needs and risks in this population. The possibility of grouping participants according to data describing multiple needs, predisposing characteristics and enabling resources was investigated using cluster analysis. Associations between these groups and recommended and installed Assistive Technology were investigated. Results: Prevalence estimates for twenty-four needs reported by people with dementia and their caregivers were provided for the first time. Heterogeneity was associated with the person reporting the needs and age of onset. Level of need was often not recorded in the dataset indicating limited assessment. Wandering risks were shown to be associated with posture and mobility, routine and cognition needs, whilst safety risks were associated with posture and mobility, and problem-solving needs. Partitioning Around Medoids cluster analysis demonstrated that robust clustering solutions could be created from data describing participants. Clustering solutions were then validated through exploring their association with recommended and installed Assistive Technology data and the published literature. Caregiver support and living situation impact Assistive Technology installed for people with dementia. Discussion: This research advances understanding of the impact that needs, safety and wandering risks, caregiver support and the living situation of the person with dementia have on variation in the assistive technology interventions recommended and installed for people with dementia. Results have implications for needs assessment and for the tailoring of Assistive Technology for this population. Keywords: dementia, assistive technology, community dwelling, meta-analysis, cluster analysis, ordinal regression, wandering, safety, risk, needs

Factors related to the quality of life in family carers of people with dementia: a meta- analysis

Objectives: This meta-analysis aimed to (1) quantitatively synthesize evidence of factors related to the quality of life (QoL) of family carers of people with dementia and (2) explore moderating factors that may influence the strength of the relationship between such potential predictive factors and carer QoL.  Methods: Studies that investigated correlations between patient/carer factors and QoL in unpaid family carers of people with dementia and were published in English, Spanish, Portuguese, or Japanese were included.  Results: Thirty-three studies were identified. The pooled correlations with carer QoL (effect size) were significantly large for depression (−0.58), significantly moderate for subjective burden (−0.47), and significantly small for people with dementia’s neuropsychiatric symptoms (−0.24). These results indicated to be robust in the context of publication bias. The results of subgroup analyses demonstrated the social and economic development status of the country where study participants resided did not moderate these effects.  Conclusion: Carer depression, subjective burden, and people with dementia’s neuropsychiatric symptoms may play a critical role in maintaining QoL of family carers regardless of the social and economic circumstances

Perceptions of Burden and Preparedness for Caregiving among the Family Caregivers of Hospitalised Older Adults: A Cross-Sectional Stud

Background: Due to the increasing care needs of older adults, family caregivers are more and more solicited. This can have a negative impact on their quality of life related to a lack of preparedness for caregiving and feelings of burden. Objectives: To measure perceptions of burden and preparedness for caregiving among the family caregivers of hospitalised older adults, and to explore their possible associations. Methods: A cross-sectional study conducted in two university hospital geriatrics wards in Switzerland. Principal family caregivers of hospitalised older adults were invited to complete sociodemographic, the Zarit Burden Interview, and the Preparedness for Caregiving Scale questionnaires. Descriptive and correlational data analyses were performed. Results: Of the 38 responding caregivers, 80% provided informal care to their spouse or parent; 45% reported a lack of preparedness to provide care and 61% reported substantial levels of burden. There was no statistically significant correlation between preparedness and burden (ρ ≤ −0.30, p = 0.07). Conclusions: A significant proportion of caregivers reported burden and a lack of preparedness. Healthcare professionals should provide adequate support to help informal caregivers to fulfil their roles

The Protective Roles Of Primary And Secondary Control Strategies Among Familial Caregivers Of Older Adults With Dementia

Caring for an older family member with dementia can be extremely stressful, often resulting in diminished psychological health. Prior research has shown that a strong sense of control protects well-being during stressful times. Therefore, greater perceived control may serve to buffer the effects of stress on familial caregivers’ psychological health. According to control theorists (Heckhausen & Schulz, 1995; Rothbaum, Weisz, & Snyder, 1982), a general sense of control is maintained through a dual process involving direct attempts to change the environment (i.e., primary control strategies) and attempts to inwardly adjust cognitions to align with the environment (i.e., secondary control strategies). The present study applied this dual process model of perceived control to familial caregivers of an older adult with dementia. Participants were 51 primary familial caregivers who completed either an online or paper and pencil survey assessing their use of primary and secondary control strategies, their overall sense of control, and several measures of well-being. The results showed that greater use of the secondary control strategy of positive reappraisal predicted a stronger sense of control in general. In turn, this stronger sense of general control predicted greater life satisfaction and more positive emotions, as well as less perceived stress and fewer depressive symptoms. Findings contribute to a better understanding of the protective role of control strategies among dementia caregivers

The Moderating Effect of Anticipatory Grief on the Relationship Between Attachment and Perceived Closeness with Satisfaction of Life and Marriage for Spousal Caregivers of Individuals with Dementia

With the population of individuals with dementia growing every year, spouses are frequently finding themselves in caregiving roles. The progressive nature of dementia often leads to grief over actual and expected declines in the physical and psychological functioning of those with the disease. Spouses may grieve over losses that have not yet occurred. This anticipatory grief may affect how spousal caregivers perceive their relationship. This may further affect the spouses’ satisfaction with life and marriage and impact the quality of care they provide to their loved one with dementia. Using electronic data collection through three national organizations that support caregivers, this study explored two areas of spousal caregivers’ functioning. First, how attachment style and perceived closeness affect the life and marital satisfaction of spousal caregivers. Second, whether anticipatory grief moderates the effects of relationship quality on satisfaction with life and marriage. Attachment and perceived closeness accounted for statistically significant variance of both life satisfaction and marital satisfaction. Anticipatory grief was not found to moderate either of these outcomes. While addressing grief may still be an area of focus for those providing support to caregivers, results from this study suggest that helping caregivers’ to improve their relationship quality and life satisfaction may be the most important target of interventio

Well-Being Throughout the Senior Years: An Issues Paper on Key Events and Transitions in Later Life

Social Development Canada’s mission is “to strengthen Canada’s social foundations by supporting the well-being of individuals, families and communities and their participation through citizen focused policies, programs and services” (Social Development Canada 2005a). Well-being is a concept that goes beyond good health to encompass physical and mental fitness as well as social fitness (being able to perform one’s social roles and the demands of everyday living adequately). As people age, they experience a number of transitions in their lives. They may retire, change residence, loose a spouse, become a caregiver, and/or develop a health problem or disability. These transitions, especially when they occur around the same time, may impact on their well-being and independence and prevent them from being contributing members of society. This paper summarizes the research on what we currently know about the key events and transitions experienced by seniors, their impacts, and the resources seniors have or need to successfully cope with these events throughout the senior years. It will also review what we know about opportunities, gaps or barriers in accessing social support programs and service delivery designed to assist seniors in coping successfully with adverse events and life transitions. Issues to be considered include availability, access and costs of community support and home health care services. Finally, the paper will attempt to provide potential policy research directions to address current knowledge gaps. This is an extensive literature, and we have limited the scope by focusing on the last 10 years of Canadian research published in Journals and by Statistics Canada. We have favored research based on national studies in this review, though there are many excellent case studies and qualitative studies that add texture to our knowledge. Recognizing that the senior population is a very heterogeneous group, this review will examine (where the research permits) differences by senior life-course stages, and other target groups such as women, the disabled, visible minority, immigrants, Aboriginal peoples, sub-regions, low income, and persons living alone. This review of the literature has shown that while we have basic information about many of the transitions in seniors’ lives, there is very little information about the various life course stages or about various sub groups of society.health and well-being, retirement, marital transitions, care-giving, homecare

Well-Being Throughout the Senior Years: An Issues Paper on Key Events and Transitions in Later Life

Social Development Canada’s mission is “to strengthen Canada’s social foundations by supporting the well-being of individuals, families and communities and their participation through citizen focused policies, programs and services” (Social Development Canada 2005a). Well-being is a concept that goes beyond good health to encompass physical and mental fitness as well as social fitness (being able to perform one’s social roles and the demands of everyday living adequately). As people age, they experience a number of transitions in their lives. They may retire, change residence, loose a spouse, become a caregiver, and/or develop a health problem or disability. These transitions, especially when they occur around the same time, may impact on their well-being and independence and prevent them from being contributing members of society. This paper summarizes the research on what we currently know about the key events and transitions experienced by seniors, their impacts, and the resources seniors have or need to successfully cope with these events throughout the senior years. It will also review what we know about opportunities, gaps or barriers in accessing social support programs and service delivery designed to assist seniors in coping successfully with adverse events and life transitions. Issues to be considered include availability, access and costs of community support and home health care services. Finally, the paper will attempt to provide potential policy research directions to address current knowledge gaps. This is an extensive literature, and we have limited the scope by focusing on the last 10 years of Canadian research published in Journals and by Statistics Canada. We have favored research based on national studies in this review, though there are many excellent case studies and qualitative studies that add texture to our knowledge. Recognizing that the senior population is a very heterogeneous group, this review will examine (where the research permits) differences by senior life-course stages, and other target groups such as women, the disabled, visible minority, immigrants, Aboriginal peoples, sub-regions, low income, and persons living alone. This review of the literature has shown that while we have basic information about many of the transitions in seniors’ lives, there is very little information about the various life course stages or about various sub groups of society.health and well-being, retirement, marital transitions, care-giving, homecare

Sowing in the autumn season : exploring benefits of green care farms for dementia patients

In the Netherlands an increasing number of farms combine agricultural production with care services for people with care needs. It is generally believed that these green care farms (GCFs) have beneficial effects on the health status of a diversity of target groups. At present, empirical studies testing this hypothesis are scarce. The main objective of the studies described in this thesis was to gain insight into the potential benefits of day care at GCFs for community‐dwelling older dementia patients. Day care at GCFs was therefore compared with day care at regular day care facilities (RDCFs). In view of the differences between both day care types regarding the day care setting and day care program it was hypothesized that they would differ in their effects on the health status of dementia patients. In two cross‐sectional studies it was tested to what extent the day program of dementia patients at GCFs differed from those at RDCFs. It appeared that at GCFs, dementia patients were (physically) more active, participated in more diverse activities, were more outdoors, and had more opportunities to perform activities in smaller groups than those at RDCFs. It was tested whether these differences resulted into different effects for five domains of health: dietary intake, cognition, emotional well‐being, behaviour, and functional performance. In a comparative cross‐sectional study dietary intake of dementia patients attending day care at GCFs or RDCFs was recorded both at home and during their time at the day care facility. The study showed that dementia patients attending day care at GCFs had significantly higher intakes of energy, carbohydrate, and fluid than their counterparts attending day care at RDCFs. In a cohort study, rates of change during 1 year in cognitive functioning, emotional well‐being, behavioural symptoms, and functional performance were compared between dementia patients attending day care at GCFs and RDCFs. Functioning in these domains remained rather stable and no differences were observed between subjects from GCFs and RDCFs. In the cohort study, also caregiver burden of family caregivers of these dementia patients was assessed. Caregivers’ quality of life, emotional distress, and feelings of competence remained rather stable in family caregivers of dementia patients from both day care settings. In conclusion, the present work has shown that GCFs exceeded RDCFs in offering older dementia patients a diverse day program and in stimulating their dietary intake. The latter may result into a better preserved nutritional status in dementia patients attending day care at GCFs than in those attending day care at RDCFs. GCFs and RDCFs were equally effective in preventing significant decrease of cognitive functioning, emotional well‐being, and functional performance and in preventing significant increase of the number of behavioural symptoms. Both day care types further prevented significant increase of caregiver burden. Day care at GCFs is a new and valuable addition to the present care modalities for community‐dwelling older dementia patients and their caregiver

Informal Care in the Light of Well-Being – the Case of Finland

The societal triumph in terms of increased life expectancy has, in combination with other development, contributed to an increased need for socially and financially sustainable care forms for older adults in Finland, as in many other parts of the Western world. An example of such a solution is informal care, that is, a formalisation of informal care where a close one with the help of public support services cares for care dependents who cannot manage on their own. The promotion of well-being of older adults is an important part of Finnish social policy. Macro-level decisions and local implementations affect well-being. Support services and benefits shape the prerequisites for coping in everyday life and subsequently experiencing well-being of older adults concerned with informal care. Simultaneously, well-being is a more complex and holistic phenomenon than only the outcome of welfare. Care is a relational and dynamic process, where norms and personal life stories are examples of factors that shape the experiences of how care services—and subsequently well-being—ought to be given or received. This dissertation aims to study the informal care of older adults in light of well-being theories in a Finnish setting. In the first study, informal care recipients’ care preferences and thoughts on the future were explored from a life course perspective. In the second study, well-being was investigated by applying the capability approach to dismantle an informal care dyad’s care arrangements and consequences on well-being across time. In the third study, the caregiver stress process model was used to investigate associations between individual economic, social, and political resources and subjective caregiver burden among older spousal caregivers in the Bothnia region. The fourth study explored the feasibility of a co-designed intervention developed in line with the World Health Organization’s Healthy Ageing paradigm with the aim of training former caregivers to become expert caregivers. In studies 1 and 2, informal care recipients’ experiences were explored based on data collected from semi-structured interviews with seven informal care recipients (Study 1) and follow-up interviews with the same respondents and their informal caregivers in Study 2. The results illustrated that the development of social care for older adults contributed to the care recipients’ well-being in both direct and indirect ways. The informal care recipients appreciated living at home despite a declined functional capacity, and the offered support services promoted this ability to some extent. Simultaneously, the social care system sometimes acted as a barrier towards experiencing well-being. As an indirect effect, negative experiences and/or perceptions of formal care alternatives contributed to feelings of insecurity and uncertainty regarding future care arrangements. In Study 3, multivariate logistic regression was used on data derived from the Gerontological Regional Database (GERDA) survey 2016 to study the associations between individual social, economic, and political resources and subjective caregiver burden among older spousal caregivers in Österbotten/Pohjanmaa (Finland) and Västerbotten (Sweden). About half of the spousal caregivers reported experiencing subjective caregiver burden, and this was slightly more common among Finnish-speaking caregivers. Frequent contact with family members indicated subjective caregiver burden, potentially meaning that frequent contact with family members is an indicator for intensive informal care. High levels of financial stress indicated subjective caregiver burden, while personal income did not. Out of the control variables, being Finnish speaking, reporting low perceived self-rated health and receiving formal support for informal care indicated subjective caregiver burden. In Study 4, quantitative and qualitative methods were used to explore the feasibility of a co-designed intervention for former informal caregivers—a group that is largely overlooked in both research and policy. The participants took part in a training programme to become ‘expert caregivers’ for current caregivers. Partly due to the already existing infrastructure for social activities for informal caregivers and/or older adults in the region of Österbotten, the intervention was successfully implemented. The results showed that there was a demand for the intervention among former caregivers and a demand among current caregivers to take part in the support offered by the trained expert caregivers. The intervention created a social context for the expert caregivers, most of whom were bereaved widows/widowers. The main conclusion of the thesis is that well-being of older adults concerned with informal care is highly complex and prone to change in terms of needs and resources. Both facilitators and barriers to well-being are interwoven in the Finnish welfare context. The results in this thesis imply that an extended view of informal care and the meaning of social relationships can lead to until now unutilized resources. To ensure that resources as well as needs are considered across different phases of informal care and among different target groups, the co-operation between different welfare actors is crucial. Well-functioning co-operation and development involving multiple welfare actors and citizens themselves form a solid foundation for successful interventions that promote well-being.Den samhälleliga triumfen i form av en ökad förväntad livslängd har i kombination med annan utveckling bidragit till ett ökat behov av socialt och ekonomiskt hållbara omsorgslösningar för äldre i Finland såsom i många andra delar av västvärlden. Ett exempel på en sådan lösning är närståendevård, d.v.s. en formalisering av informell omsorg där en anhörig med hjälp av offentliga stödtjänster ger vård och omsorg åt vårdbehövande som inte klarar sig självständigt. Främjandet av välbefinnande bland äldre utgör en viktig del av Finlands socialpolitiska verksamhet. Politiska beslut på makronivå och lokala implementeringar i kommunerna påverkar välbefinnande. Stödtjänster och förmåner formar förutsättningar för att klara vardagen och därmed uppleva välbefinnande bland äldre som berörs av närståendevård. Samtidigt är välbefinnande ett mer komplext och holistiskt fenomen än enbart resultatet av välfärd. Omsorg är en relationell och dynamisk process, där normer och den personliga livshistorien är exempel på faktorer som kan forma upplevelserna av hur omsorg bör ges eller tas emot – och därmed välbefinnandet. Syftet med denna avhandling är att studera närståendevård bland äldre i ljuset av välbefinnandeteorier i en finländsk kontext. I den första delstudien undersöktes närståendevårdtagares vårdpreferenser och tankar om framtiden med hjälp av livsloppsperspektivet. I den andra delstudien användes kapabilitetsteorin för att demontera en närståendevårddyads vårdarrangemang och dess konsekvenser för välbefinnande över tid. I den tredje delstudien användes närståendevårdares stressprocessmodell för att studera sambanden mellan individuella ekonomiska, sociala och politiska resurser och subjektiv närståendevårdarbörda bland äldre makar som ger närståendevård i Botniaregionen. I den fjärde delstudien studerades genomförbarheten och effekterna av en samskapad intervention som utvecklats i enlighet med Världshälsoorganisationens Hälsosamt Åldrande paradigm med syfte att utbilda före detta närståendevårdare till att bli erfarenhetsmentorer. I studie 1 och 2 undersöktes närståendevårdmottagares erfarenheter med fokus på vårdpreferenser och vårdarrangemang baserat på data insamlat från semistrukturerade intervjuer med sju närståendevårdmottagare (delstudie 1) samt uppföljningsintervjuer med samma respondenter och deras närståendevårdare i delstudie 2. Resultaten från studie 1 och 2 illustrerade hur utvecklingen inom äldreomsorgen bidrog till närståendevårdtagares välbefinnande på både direkta och indirekta sätt. Närståendevårdtagarna värdesatte att få bo hemma trots en nedsatt funktionsförmåga och de erbjudna stödtjänsterna främjade denna möjlighet till viss del. Samtidigt fungerade social- och hälsovårdssystemet ibland som ett hinder för att uppleva välbefinnande. Som en indirekt effekt bidrog negativa erfarenheter och/eller föreställningar om formella vårdalternativ till känslor av otrygghet och osäkerhet gällande framtida vårdarrangemang. I studie 3 användes multivariat logistisk regression på data från GERDA-enkätundersökningen 2016 för att studera sambanden mellan individuella sociala, ekonomiska och politiska resurser och subjektiv närståendevårdbörda bland äldre närståendevårdmakar i Österbotten och Västerbotten. Ungefär hälften av närståendevårdarna rapporterade att de upplevde subjektiv närståendevårdbörda och detta var något mer förekommande bland finskspråkiga närståendevårdare. Frekvent kontakt med familjemedlemmar indikerade subjektiv närståendevårdbörda, vilket potentiellt kan innebära att frekvent kontakt med familjemedlemmar är en indikator för intensiv närståendevård. En hög nivå av ekonomisk stress indikerade subjektiv närståendevårdbörda, medan personlig inkomst inte gjorde det. Av kontrollvariablerna indikerade finsk språkgruppstillhörighet, låg självskattad hälsa och formellt stöd för närståendevård subjektiv närståendevårdbörda. I studie 4 användes både kvantitativa och kvalitativa metoder för att studera genomförbarheten i en samskapad intervention för före detta närståendevårdare – en grupp som till stor del är förbisedd inom både forskning och policy. Deltagarna tog del av ett utbildningsprogram för att bli ”erfarenhetsmentorer” för nuvarande närståendevårdare. Delvis på grund av den redan existerande infrastrukturen för sociala aktiviteter för närståendevårdare och/eller äldre individer i regionen Österbotten, kunde interventionen framgångsrikt implementeras. Resultaten visade att det fanns efterfrågan på interventionen bland de utbildade erfarenhetsmentorerna och en efterfrågan bland nuvarande närståendevårdare att ta del av erfarenhetsmentorernas stöd. Interventionen skapade en social kontext för erfarenhetsmentorerna varav de flesta var änkor/änklingar. Avhandlingens huvudsakliga slutsats är att villkoren för att uppleva välbefinnande bland äldre berörda av närståendevård är mycket komplexa och föränderliga i termer av behov och resurser. Både möjliggörande och hindrande faktorer för välbefinnande är inbäddade i den finländska välfärdskontexten. Resultaten i avhandlingen tyder på att en vidgad syn på närståendevård och sociala relationers betydelse kan leda till hittills outnyttjade resurser. För att säkerställa att såväl resurser som behov tas i beaktande under närståendevårdens gång och bland olika målgrupper som berörs av närståendevård, bör samarbetet mellan olika aktörer inom välfärden fungera. Ett välfungerande samarbete och utvecklingsarbete som involverar olika välfärdsaktörer och medborgare själva skapar en god grund för framgångsrik verksamhet som stöder välbefinnande