What Can We Learn from the Caregivers of Adults with Dementia? A Qualitative Study

Introduction: In the US today, there are approximately 6.5 million people age 65 or older living with Alzheimer’s Disease or other dementias. This number is expected to increase to 12.7 million by 2050. Dementia imposes debility and frailty upon those effected, which is progressive and often follows an unpredictable trajectory. This places significant burdens on their informal caregivers, negatively impacting financial security, emotional and physical health, and overall quality of life. Informal caregivers are a heterogeneous group of partners, spouses, adult children, family members and others. Purpose: This qualitative study explores the experiences, worries and concerns of informal caregivers of older adults with dementia, in order to describe improved policy and service delivery models that could provide efficient and sustainable solutions to their challenges. Methods: Semi-structured interviews were conducted with seven informal caregivers. Transcripts of these interviews were analyzed using the Grounded Theory analytic process referred to as the Constant Comparison Method, consisting of coding, memoing and theorizing. Results: Nine sub-categories and three categories were identified from analysis and data comparison The three categories were “Difficult day-to-day experiences and activities,” “ Inner thoughts and suffering” and “Hoping to make a difference. The final theme emerged as “Informal caregiving for older adults with dementia is a condition.” Some literature has referred to this as “caregiver stress” or the Caregiver Syndrome. Conclusion: Informal caregivers of older adults with dementia experience significant physical, and emotional stresses that result in concerns about their overall wellness. This in-turn impacts their ability to function as sustainable caregivers for their family members at home. Lack of reliable in-home personal care supports, patient companionship and respite result in excess worry, stress and loss of quality of life for the caregiver. Over a trajectory of years, inherent in the dementia diagnosis, informal caregivers are likely to encounter negative physical and mental health outcomes. Without changes in both policy and reimbursement through home health, hospice, palliative care and community-based resources, this condition of caregiver stress or “syndrome” will contribute to the ongoing challenges of caring for an ever-increasing number of vulnerable elderly individuals

The effectiveness and cost-effectiveness of respite for caregivers of frail older people

The proportion of frail elderly people in the industrialized world is increasing. Respite care is a potentially important way of maintaining the quality of life for these people and their caregivers. The objective of this systematic review was to determine the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their caregivers. To identify relevant studies, 37 databases were searched, and reference checking and citation searches were undertaken. Well-controlled effectiveness studies were eligible for inclusion, with uncontrolled studies admissible only in the absence of higher-quality evidence. Studies assessed the effect of community-based respite on caregivers of frail elderly people relative to usual care or to another support intervention. Eligible economic evaluations also addressed costs. Where appropriate, data were synthesized using standard meta-analytic techniques. Ten randomized, controlled trials, seven quasi-experimental studies and five uncontrolled studies were included in the review. For all types of respite, the effects upon caregivers were generally small, with better-controlled studies finding modest benefits only for certain subgroups, although many studies reported high levels of caregiver satisfaction. No reliable evidence was found that respite care delays entry to residential care or adversely affects frail older people. The economic evaluations all assessed day care, which tended to be associated with similar or higher costs than usual care. Given the increasing numbers of frail elderly people and the lack of up-to-date, good-quality evidence for all types of respite care, better-quality evidence is urgently needed to inform current policy and practice

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

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

Factors of resilience in informal caregivers of people with dementia from integrative international data analysis

Background/Aims: Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Methods: Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. Results: The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Conclusion: Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services

Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia

Objective: The authors systematically reviewed the literature on psychological approaches to treating the neuropsychiatric symptoms of dementia.Method: Reports of studies that examined effects of any therapy derived from a psychological approach that satisfied prespecified criteria were reviewed. Data were extracted, the quality of each study was rated, and an overall rating was given to each study by using the Oxford Centre for Evidence-Based Medicine criteria.Results: A total of 1,632 studies were identified, and 162 satisfied the inclusion criteria for the review. Specific types of psychoeducation for caregivers about managing neuropsychiatric symptoms were effective treatments whose benefits lasted for months, but other caregiver interventions were not. Behavioral management techniques that are centered on individual patients' behavior or on caregiver behavior had similar benefits, as did cognitive stimulation. Music therapy and Snoezelen, and possibly sensory stimulation, were useful during the treatment session but had no longer-term effects; interventions that changed the visual environment looked promising, but more research is needed.Conclusions: Only behavior management therapies, specific types of caregiver and residential care staff education, and possibly cognitive stimulation appear to have lasting effectiveness for the management of dementia-associated neuropsychiatric symptoms. Lack of evidence regarding other therapies is not evidence of lack of efficacy. Conclusions are limited because of the paucity of high-quality research ( only nine level-1 studies were identified). More high-quality investigation is needed

Caregiver Burden and Perceived Health Competence when Caring for Family Members Diagnosed with Alzheimer’s Disease and Related Dementia

Purpose: To identify if there is a relationship between perceived health competence and burden of care of informal caregivers of family members with Alzheimer’s Disease and Related Dementia (ADRD). Methods: Informal caregivers 18 years and older who received services from the Alzheimer’s Resource of Alaska were invited to complete a survey. Conclusion: Findings indicate that there was a significant negative correlation between Perceived Health Competence and Burden of Care (N = 64, r = -.54, p <.001). Furthermore, the three subscales of the Modified Montgomery-Borgatta Caregiver Burden Scale: Relationship burden (r = -.29, p = .021), Objective burden (r = -.65, p = < .001) and Stress burden (r = -.41, p = .001) indicated that different types of burden affect informal caregivers’ health competence. Implications for practice: Based on the findings of this study, it is important to ensure that informal caregivers do have time for themselves as well as taking care of their own health needs. Nurse Practitioners can play an important role in early detection and prevention, with periodic screening to help identify current needs and to ensure optimal health for these informal caregivers

“A respite thing” – A qualitative study of a creative arts leisure programme for family caregivers of people with dementia

This study explored the meanings of participating in a five-week creative arts leisure programme designed for family caregivers of people with dementia, using interpretative phenomenological analysis. Eight carers attended and four who met the eligibility criteria agreed to be interviewed. Participants experienced the arts group as providing a sense of freedom and respite, strengthening identity through promoting achievement, offering social support through a collective focus on art- and craft-making, and increasing resilience for coping with caring. Some found the five-week programme too short. Benefits were linked to the security of knowing that loved ones with dementia were close by, being well cared for. Further research is needed into the longer-term benefits of creative arts groups for promoting carer well-being

Exemplar models and support for older carers and carers of people with dementia: informing commissioning

In May 2017 NHS England commissioned a project to support its Commitment to Carers programme. The focus of the work was to scope exemplar models of support for older carers, and for carers of people with dementia (of any age). The work took place between May 2017 and March 2018, and included a consultation workshop in February 2018. A full report of the findings is available, but this brief summary has been prepared primarily to give feedback to the people who contributed to the project and shared their experience with us. Our conclusions and recommendations should inform the further development of NHS England’s Commitment to Carers, but more widely they also point to gaps in which new approaches might be further developed and tested, building on the experiences and exemplars discussed