Features of problematic eating behaviors among community-dwelling older adults with dementia: Family caregivers' experience

This study aimed to explore family caregivers' experience of the problematic eating behaviors among community-dwelling older adults with dementia, and how these caregivers cope with these problems. An exploratory qualitative study using purposive sampling recruited family caregivers of community-dwelling older adults with dementia in southern Taiwan. In-depth interviews were carried out with a semi-structured interview guide. Data were saturated when the number of participants reached a certain number. The following three features were derived from the content analysis: fundamental deviations of eating behaviors, expressing needs through eating behaviors, and loss of eating ability. The results also show that caregivers often derived their own ways of coping with the problems they faced, and tended to have negative attitudes and behaviors with regard to coping with the demands of older adults with dementia. The findings of this study can provide valuable information to family caregivers with regard to the problematic eating behaviors of older adults with dementia, so that early recognition and understanding of such behaviors facilitate appropriate responses, thus reducing the burden shouldered by caregivers.     

Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design

BackgroundDementia is the leading cause of loss of independence in older adults worldwide. In the U.S., approximately 15 million family members provide care to relatives with dementia. This paper presents the rationale and design for a translational study in which an evidence-based, non-pharmacologic intervention for older adults with dementia and family caregivers (CGs) is incorporated into a publicly-funded home care program for older adults at risk for nursing home admission.MethodsThe 4-month Care of Persons with Dementia in their Environments (COPE) intervention is designed to optimize older adults' functional independence, and to improve CG dementia management skills and health-related outcomes. COPE features 10 in-home occupational therapy visits, and 1 in-home visit and 1 telephone contact by an advanced practice nurse. COPE was deemed efficacious in a published randomized clinical trial. In the present study, older adults with dementia enrolled in the Connecticut Home Care Program for Elders (CHCPE) and their CGs are randomly assigned to receive COPE plus their ongoing CHCPE services, or to continue receiving CHCPE services only.OutcomesThe primary outcome for older adults with dementia is functional independence; secondary outcomes are activity engagement, quality of life, and prevention or alleviation of neuropsychiatric symptoms. CG outcomes include perceived well-being and confidence in using activities to manage dementia symptoms. Translational outcomes include net financial benefit of COPE, and feasibility and acceptability of COPE implementation into the CHCPE. COPE has the potential to improve health-related outcomes while saving Medicaid waiver and state revenue-funded home care program costs nationwide.     

Family caregivers of patients with frontotemporal dementia: An integrative review

ObjectivesThe purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers’ health and well-being, and (3) identify coping strategies used by family caregivers.BackgroundFrontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia.Design and data sourcesAn integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles.ResultsFindings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful.ConclusionsFamily caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique needs of family caregivers. Future research should focus on examining interventions and strategies to reduce caregiver burden.     

Public Health Model Identifies Recruitment Barriers among Older Adults with Delirium and Dementia

Recruiting older adults and their family caregivers into research studies presents challenges. Although the literature notes some general recruitment challenges, no studies specifically address the unique challenges of recruiting older adults who have Alzheimer's Disease (AD) and their family caregivers in studies about delirium or suggest using a framework to identify barriers to recruiting this population. In conducting a pilot study about preparing family caregivers to detect delirium symptoms in older adults with (AD) the researchers used the Public Health Model for identifying barriers to recruitment. The goals of this methodological article are to: (1) briefly describe the methodology of the pilot study to illustrate how the Public Health Model was applied in the context of the present study and (2) discuss the benefits of the Public Health Model for identifying the barriers to recruitment in a study that prepared family caregivers to detect delirium symptoms in older adults with AD. The Public Health Model helped us to identify four specific barriers to recruitment (lack of knowledge about delirium, desire to maintain normalcy, protective caregiving behaviors, and older adult's fears) and ways to overcome them. The Public Health Model might also help other researchers address similar issues.     

Factors related to aggressive behaviors among older adults in nursing homes of Korea: A cross-sectional survey study

BackgroundAggressive behavior is one of the most challenging behavioral psychological symptoms for older adults and their caregivers in nursing homes.ObjectivesThe purpose of this study was to examine and identify contributing factors of aggressive behaviors among older adults in nursing homes in South Korea.DesignThis is a secondary analysis of a national survey on health and functional status among older nursing home residents.SettingsParticipants were recruited from 91 nursing homes.ParticipantsA total of 1447 older adults were included for final analysis and they were randomly selected from a nationally representative sample of people 65 years and older at the sampled nursing homes.MethodsPresence of aggressive behaviors was identified when participants showed at least one of the five symptoms in the Korean interRAI Long-Term Care Facility Assessment Tool such as physical abuse, verbal abuse, socially inappropriate or destructive behaviors, and resistance to care. Theory-based contributing factors were selected and examined. Multivariate logistic regression analyses were performed.ResultsAbout 19% of older nursing homes residents had aggressive behaviors, and several health and social factors including social engagement are associated with aggressive behaviors.ConclusionsAggressive behavior is prevalent in older nursing home residents with and without dementia in South Korea and individual and institutional level interventions are necessary.     

Satisfaction with caregiving among informal caregivers of elderly people with dementia based on the salutogenic model of health

ObjectivesThe main objective was to analyze the variables Sense of Coherence, Resilience and Emotional Regulation as predictors of satisfaction with care in caregivers of older adults people with dementia.MethodsAn ex post facto cross-sectional study design with a single group. The data were collected between June and October 2020.63 caregivers of older adults people with severe dementia participated, by responding to questionnaires concerning the study variables during a telephone interview. Information was also collected regarding the characteristics of the care provided (years of evolution, degree of dementia, index of independence) and regarding the caregiver (age and years of caregiving) which will be analyzed as control variables. The data were analyzed using correlation analysis and multiple linear regression analysis.ResultsThe participants presented average levels for Sense of Coherence, Resilience, Emotional Regulation (M = 16.93) and a high degree of Satisfaction with care. Sense of Coherence was the main predictor of Satisfaction with care, explaining up to 67% of the variance, through its Significance and Comprehensibility dimensions. Although the Resilience variable presented a significant association with Satisfaction, its role in the predictive model was displaced by Sense of Coherence.ConclusionsSense of Coherence and Resilience are relevant psychological variables because of their positive relationship with satisfaction with care among caregivers of older adults people with dementia. The caregivers' perception of the significance and comprehensibility of the situation are important positive predictors of their satisfaction with the care of older people with dementia. These results are suggestive to guide the follow-up and psychological support of caregivers.     

Alzheimer's Disease and Vascular Dementia: The Complex Relationship between Diagnosis and Caregiver Burden

The purpose of this study was to determine whether patient dementia diagnostic type (Alzheimer's Disease/Vascular Dementia) is associated with caregiver burden. A retrospective case review was conducted of patient and caregiver information collected at a university-based dementia clinic. Results showed that primary dementia diagnosis was not associated with burden. Rather, psychotic symptoms paired with poor IADL functioning generated the most burden, while cognitive dysfunction did not significantly influence burden. Additionally, caregiver gender (female), depressive symptoms, and being an adult child of the care recipient were associated with increased caregiver burden. Findings advocate for including tailored designs in caregiver interventions.     

Effectiveness of case management among older adults with early symptoms of dementia and their primary informal caregivers: a randomized clinical trial

Background

It is believed that timely recognition and diagnosis of dementia is a pre-condition for improving care for both older adults with dementia and their informal caregivers. However, diagnosing dementia often occurs late in the disease. This means that a significant number of patients with early symptoms of dementia and their informal caregivers may lack appropriate care.

Objectives

To compare the effects of case management and usual care among community-dwelling older adults with early symptoms of dementia and their primary informal caregivers.

Design

Randomized controlled trial with measurements at baseline and after 6 and 12 months.

Setting

Primary care in West-Friesland, the Netherlands.

Participants

99 pairs of community-dwelling older adults with dementia symptoms (defined as abnormal screening for symptoms of dementia) and their primary informal caregivers.

Intervention

12 months of case management by district nurses for both older adults and informal caregivers versus usual care.

Measurements

Primary outcome: informal caregiver's sense of competence. Secondary outcomes: caregiver's quality of life, depressive symptoms, and burden, and patient's quality of life. Process measurements: intervention fidelity and caregiver's satisfaction with the quality of case management.

Results

Linear mixed model analyses showed no statistically significant and clinically relevant differences over time between the two groups. The process evaluation revealed that intervention fidelity could have been better. Meanwhile, informal caregivers were satisfied with the quality of case management.

Conclusion

This study shows no benefits of case management for older adults with dementia symptoms and their primary informal caregivers. One possible explanation is that case management, which has been recommended among diagnosed dementia patients, may not be beneficial if offered too early. However, on the other hand, it is possible that: (1) case management will be effective in this group if more fully implemented and adapted or aimed at informal caregivers who experience more severe distress and problems; (2) case management is beneficial but that it is not seen in the timeframe studied; (3) case management might have undetected small benefits. This has to be established.Trial registration ISCRTN83135728.     

Family Caregivers for People with Dementia and the Role of Occupational Therapy

ABSTRACT. As the population continues to age, the prevalence of Alzheimer's disease and related dementia (ADRD) will increase, along with the number of informal (e.g., family and friends) caregivers needed. The negative physical, mental, and financial impact providing such care has on the caregiver, in addition to the tremendous economic value of their care, has been well documented. Furthermore, the quality of care and the amount of care that is provided has also been shown to influence the overall health and wellbeing of the care receiver and caregiver. The current qualitative, phenomenological study explored the experience of these family caregivers and how occupational therapists can better assist caregivers for people who have dementia. Five themes emerged: Personal Changes, Obstacles/Challenges, Support Network, Emotions, and Healthcare Thoughts. A discussion of the themes and how occupational therapists can assist these caregivers is included.     

Care tasks and impact of caring in primary family caregivers: A cross-sectional study from a nursing perspective

BackgroundFamily caregivers of persons with dementia often experience a negative impact on their health. More studies based on nursing theories are needed to improve the provision of care.AimsTo describe the care provided by family caregivers of persons with dementia and the impact on their health, as well as to analyse how personal variables of caregivers are related to care tasks and their health impact.MethodsMulti-centric cross-sectional prospective study conducted on a sample of 423 primary family caregivers of persons with dementia from Spain. Data were collected through ICUB97-R questionnaire (January–April 2019), based on the fourteen needs of Virginia Henderson's Nursing Model. Data was analysed through one-way analysis of variance and Student's t-test.ResultsThe caregiver profile was a middle-aged married woman without higher education living with the cared person, predominantly her mother. The most frequently provided care corresponded to “nutrition” and “movement” needs. Lack of free time, modifications on leisure activities, reduced sleep or rest and disruption of family life emerged as the greatest repercussions on the caregiver's health. The age of the caregiver and time caring showed differences on impact of care and care tasks, respectively.ConclusionThe identification of the types of care provided, the health impact of caring and the variables affecting the family caregiver's vulnerability is essential to develop effective individualised nursing care plans, including health education interventions to improve the quality of life of both caregivers and persons cared for.     

Transitions in dementia care: theoretical support for nursing roles

There are several predictable transitions in the course of dementia, and care is often provided by family members in the earlier stages. Later stages often include the move to one or more care settings. Important transitions for those with dementia and their families and/or caregivers include the initial diagnosis of dementia; advanced planning for financial concerns and healthcare considerations; driving cessation; managing behavioral symptoms; changes in settings; and preparing for end-of-life. Evidence has emerged to inform the important roles nurses may have in each of the transitions. In this article, we explore the concept of transitional care and how it relates to nursing care of older adults with Alzheimer's disease and other dementias. We begin by briefly describing a middle-range theory of transitions. Next, we describe the dementia trajectory and provide evidence for expanding nursing roles in transitions. Also included are recommendations for research in the area of roles and transitional care.     

Reactions of assisted living staff to behavioral and psychological symptoms of dementia

This study investigates the experiences of unlicensed staff providing care for older adults with behavioral and psychological symptoms of dementia (BPSD). The purpose of this study was to describe the types and frequency of BPSD reported by unlicensed caregivers and to describe reactions and training of the caregivers who provide care to residents with BPSD. Data were derived from 87 staff-resident dyads in twelve assisted living facilities (ALFs). Types and frequency of BPSD and staff reaction to BPSD were collected using standardized measures. Demographic data included amount of staff training related to caring for someone with BPSD. Dementia related behaviors and psychological symptoms were prevalent in the ALF residents, with memory related symptoms being the most frequently reported. Symptoms of depression in the ALF residents were less frequent yet accounted for the highest level of staff reaction. Limited training related to caring for residents with cognitive impairment was reported by staff. Developing ALF staff skills in identifying and managing depression in older adults with dementia may serve a dual purpose of improving quality of life for residents and for ALF staff.     

Recruitment and enrollment of caregivers for a lifestyle physical activity clinical trial

This article presents the efficacy of the recruitment framework used for a clinical trial with sedentary family caregivers of persons with Alzheimer's disease. An integrated social marketing approach with principles of community‐based participatory research provided the theoretical framework for organizing recruitment activities. This multi‐pronged approach meant that caregivers were identified from a range of geographic locations and numerous sources including a federally funded Alzheimer's disease center, health care providers, community based and senior organizations, and broad‐based media. Study enrollment projections were exceeded by 11% and resulted in enrolling n = 211 caregivers into this clinical trial. We conclude that social marketing and community‐based approaches provide a solid foundation for organizing recruitment activities for clinical trials with older adults. © 2011 Wiley Periodicals, Inc. Res Nurs Health 35:70–81, 2012     

Paid Caregivers in the Community-based Dementia Care Team: Do Family Caregivers Benefit?

PurposeOlder adults with dementia often rely on both paid caregivers (ie, home health aides, personal care attendants, other direct care workers) and family caregivers (ie, spouses, children, other unpaid individuals) to remain in the community. This study conceptualizes paid caregivers as part of the collaborative dementia care team and examines the association between receipt of paid care and primary family caregiver experience.MethodsUsing data from 3 waves (2011, 2015, and 2017) of the National Health and Aging Trends Study linked to the National Study of Caregiving, community-dwelling Medicare beneficiaries aged ≥67 years with advanced dementia (n = 338 observations) were identified. Primary family caregiver experiences were compared among those with zero, part-time (<40 hours/week), and full-time (≥40 hours/week) paid care, and multivariable models were used to evaluate the associations between full-time paid care and family caregiver strain (eg, being overwhelmed due to caregiving) and activity restriction (eg, being unable to work for pay due to caregiving).FindingsAbout one half of the community-dwelling older adults with advanced dementia received paid care: 30% had part-time paid care and 18% had full-time paid care. The experiences of family caregivers of those receiving part-time and no paid care were not significantly different. After adjusting for family caregiver and care recipient characteristics, receipt of full-time paid care was associated with a nearly 70% reduced odds of having activity restrictions due to caregiving (odds ratio, 0.31; P = 0.01) and a reduction in mean caregiver strain score (–0.73; P = 0.04). There was no statistically significantly association between the odds of high caregiver strain (score ≥5) and receipt of paid care (odds ratio, 0.65; P = 0.33).ImplicationsThe provision of paid care for individuals with dementia in the community may benefit family caregivers. Future work should acknowledge the important ways that paid caregivers contribute to outcomes for all members of the collaborative dementia care team.     

Adapting the family management style framework for families caring for older adults with dementia

This article presents an adaptation of the Family Management Style Framework (FMSF)-a well-established framework of family response to chronic condition care of children-to families caring for older adults with dementia. Using the FMSF to better understand how families manage dementia care can provide clinicians with insights on how to work effectively with families. Using data from interviews with eight female caregivers of older adults with dementia, this secondary analysis adapts the FMSF, and identifies new dimensions that apply specifically to families caring for older adults with dementia. The discussion draws comparisons between the family management of a child with chronic condition to management of an older adult with dementia. The article concludes with a discussion of how understanding how families manage care of an older adult with dementia informs assessment for management styles and the tailoring of interventions specific to family, caregiver, and older adult needs.     

Psychological,physical, social,and spiritual well-being similarities between Korean older adults and family caregivers

There is a growing recognition that the similarities between older adults and family caregivers has both practical and research implications; caregivers' well-being influences older adults' well-being and vice versa. There has been a paucity of studies that explore the similarities between Korean older adults and their caregivers. This study aims to examine psychological, physical, social, and spiritual well-being similarities among 157 older adult-caregiver dyads in Seoul, Korea. There was a significant degree of similarities between older adults and their caregivers with respect to psychological, social, and spiritual well-being, but not to physical well-being. Present findings suggest that nurses and other health care professionals should be involved and collaborate with family caregivers to take care of older adults; to understand the dynamic, caring relationships between older adults and their family caregivers; and to improve the well-being of older adults as well as their family caregivers.