scholarly journals THE ART OF CARING: EXPLORING HOW DEMENTIA CARE PARTNERS MANAGE CARE CHALLENGES AND FIND RESILIENCE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S594-S594
Author(s):  
Amanda N Leggett ◽  
Laura N Gitlin

Abstract Approximately 15 million Americans serve as family caregivers for a person with Alzheimer’s disease or another form of age-related dementia and this care can take a physical and emotional toll. Understudied is the process of how families actually provide care in response to care challenges, and how to find respite and resilience amidst care challenges. This symposium considers how caregivers handle daily challenges related to dementia including activities of daily living, behavioral and psychological symptoms of dementia, general health and medical comorbidities. In addition to characterizing care partner’s distinct styles of management (Leggett et al.) and knowledge and capacity to manage health care (Sadak et al.), the papers also provide perspective on positive aspects of care management such as the impact of respite on positive mood (Wylie et al.), the moderating role of relationship quality on responses to behavioral and psychological symptoms of dementia (Chunga et al.) and finally how caregivers’ problem-related, self-growth, and help-related behaviors compose their resilience to care challenges (Zhou et al.). To conclude, our discussant Dr. Laura Gitlin will offer insight on cross-cutting implications across studies and offer perspective on how research, intervention science, and clinical practice may better account for caregiver management styles to promote growth and resilience in caregivers and their care partners with dementia.

2021 ◽  
Vol 42 (3) ◽  
pp. 825-833
Author(s):  
Arianna Manini ◽  
Michela Brambilla ◽  
Laura Maggiore ◽  
Simone Pomati ◽  
Leonardo Pantoni

Abstract Background During Covid-19 pandemic, the Italian government adopted restrictive limitations and declared a national lockdown on March 9, which lasted until May 4 and produced dramatic consequences on people’s lives. The aim of our study was to assess the impact of prolonged lockdown on behavioral and psychological symptoms of dementia (BPSD). Methods Between April 30 and June 8, 2020, we interviewed with a telephone-based questionnaire the caregivers of the community-dwelling patients with dementia who had their follow-up visit scheduled from March 9 to May 15 and canceled due to lockdown. Among the information collected, patients’ BPSDs were assessed by the Neuropsychiatric Inventory (NPI). Non-parametric tests to compare differences between NPI scores over time and logistic regression models to explore the impact of different factors on BPSD worsening were performed. Results A total of 109 visits were canceled and 94/109 caregivers completed the interview. Apathy, irritability, agitation and aggression, and depression were the most common neuropsychiatric symptoms experienced by patients both at baseline and during Covid-19 pandemic. Changes in total NPI and caregiver distress scores between baseline and during lockdown, although statistically significant, were overall modest. The logistic regression model failed to determine predictors of BPSD worsening during lockdown. Conclusion This is one of the first studies to investigate the presence of BPSD during SARS-CoV-2 outbreak and related nationwide lockdown, showing only slight, likely not clinically relevant, differences in BPSD burden, concerning mostly agitation and aggression, anxiety, apathy and indifference, and irritability.


Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 590-605 ◽  
Author(s):  
Courtney A Polenick ◽  
Laura M Struble ◽  
Barbara Stanislawski ◽  
Molly Turnwald ◽  
Brianna Broderick ◽  
...  

Background and objectives Behavioral and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage. Caregivers’ approaches for handling these behaviors have implications for both care partners’ well-being. Yet the specific strategies that caregivers use in their daily management of behavioral and psychological symptoms of dementia are relatively unknown. This study used in-depth focus group data to examine family caregivers’ strategies for managing behavioral and psychological symptoms of dementia. Design As part of a larger study (NINR R01NR014200), four focus groups were conducted with a total of 26 family caregivers of older adults with dementia. Caregivers were asked to describe the strategies they use to manage behavioral and psychological symptoms of dementia. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major categories. Results Caregivers managed behavioral and psychological symptoms of dementia through (1) modifying interactions within the care dyad (e.g., simplifying communication); (2) modifying the care environment (e.g., using written prompts); (3) activity engagement; (4) humor; (5) self-care; and (6) social support. Conclusion Family caregivers manage behavioral and psychological symptoms of dementia using strategies to minimize stress and address the needs of both care partners. Caregivers’ own accounts of these approaches reveal a window into their everyday management of difficult behaviors. The present findings generate key information for routine clinical care and targeted interventions to promote caregiver well-being.


Biomedicines ◽  
2020 ◽  
Vol 8 (6) ◽  
pp. 150 ◽  
Author(s):  
Sangki Park ◽  
Ahream Bak ◽  
Sujin Kim ◽  
Yunkwon Nam ◽  
Hyeon soo Kim ◽  
...  

Patients with dementia suffer from psychological symptoms such as depression, agitation, and aggression. One purpose of dementia intervention is to manage patients’ inappropriate behaviors and psychological symptoms while taking into consideration their quality of life (QOL). Animal-assisted intervention (AAI) and pet-robot intervention (PRI) are effective intervention strategies for older people with cognitive impairment and dementia. In addition, AAI and PRI have been shown to have positive effects on behavioral and psychological symptoms of dementia (BPSD). However, studies into the association between AAI/PRI and BPSD have elicited inconsistent results. Thus, we performed a meta-analysis to investigate this association. We analyzed nine randomized controlled trials on AAI and PRI for dementia patients published between January 2000 and August 2019 and evaluated the impact of AAI/PRI on agitation, depression, and QOL. We found that AAI and PRI significantly reduce depression in patients with dementia. Subsequent studies should investigate the impact of AAI and PRI on the physical ability and cognitive function of dementia patients and conduct a follow-up to investigate their effects on the rate of progression and reduction of symptoms of dementia. Our research will help with neuropsychological and environmental intervention to delay or improve the development and progression of BPSD.


2000 ◽  
Vol 12 (S1) ◽  
pp. 107-109 ◽  
Author(s):  
Wolfgang Meins

Compared with the rather uniform cognitive syndrome in Alzheimer's disease (AD), behavioral and psychological symptoms of dementia (BPSD) are considerably more heterogeneous in terms of incidence, prevalence, and association with disease duration and severity of dementia (Hope et al., 1999). The neurobiologic basis of AD is obviously less of a determinant of noncognitive symptoms than of cognitive symptoms. Therefore, the possible psychological and social causes of BPSD, such as premorbid personality, should be considered. Underlying personality traits not only shape a person's response to normal aging, but also set the stage for a range of responses to age-related stress and brain disease (Agronin, 1998).


2020 ◽  
Vol 16 (14) ◽  
pp. 1269-1275
Author(s):  
Sun-Wung Hsieh ◽  
Ming-Wei Liu ◽  
Ling-Chun Huang ◽  
Meng-Ni Wu ◽  
Yuan-Han Yang

Background: The Angiotensin-Converting Enzyme (ACE) gene has drawn attention for its possible role in regulating the degradation of β-amyloid (Aβ), yet its role in affecting the cognitive and psychiatric symptoms of Alzheimer`s Disease (AD) patients has yet to be elucidated. Objective: This study aimed to investigate whether the ACE gene acts as a risk factor of Behavioral and Psychological Symptoms of Dementia (BPSD) in the AD population. Method: The genotyping of ACE and Apolipoprotein E gene with allele ε4(APOEε4) was determined among 360s clinically diagnosed AD patients. Symptoms and severity of BPSD were evaluated annually via Neuropsychiatric Inventory (NPI). Results: At the base measurement of the first year of patient recruitment, there were no significant contributory risk factors to NPI score. In the two-year follow-up, ACE insertion polymorphism showed a significant risk (adjusted odds ratio=1.65, 95% CI=1.1- 2.5, p=0.019) of progression of NPI total score. Conclusion: ACE gene is involved in aggravating BPSD among AD patients.


2016 ◽  
Vol 28 (11) ◽  
pp. 1761-1774 ◽  
Author(s):  
Alexandra Feast ◽  
Esme Moniz-Cook ◽  
Charlotte Stoner ◽  
Georgina Charlesworth ◽  
Martin Orrell

ABSTRACTBackground:Behavioral and psychological symptoms in dementia (BPSD) are important predictors of institutionalization as well as caregiver burden and depression. Previous reviews have tended to group BPSD as one category with little focus on the role of the individual symptoms. This review investigates the role of the individual symptoms of BPSD in relation to the impact on different measures of family caregiver well-being.Methods:Systematic review and meta-analysis of papers published in English between 1980 and December 2015 reporting which BPSD affect caregiver well-being. Paper quality was appraised using the Downs and Black Checklist (1998).Results:Forty medium and high quality quantitative papers met the inclusion criteria, 16 were suitable to be included in a meta-analysis of mean distress scores. Depressive behaviors were the most distressing for caregivers followed by agitation/aggression and apathy. Euphoria was the least distressing. Correlation coefficients between mean total behavior scores and mean distress scores were pooled for four studies. Irritability, aberrant motor behavior and delusions were the most strongly correlated to distress, disinhibition was the least correlated.Conclusions:The evidence is not conclusive as to whether some BPSD impact caregiver well-being more than others. Studies which validly examined BPSD individually were limited, and the included studies used numerous measures of BPSD and numerous measures of caregiver well-being. Future research may benefit from a consistent measure of BPSD, examining BPSD individually, and by examining the causal mechanisms by which BPSD impact well-being by including caregiver variables so that interventions can be designed to target BPSD more effectively.


2012 ◽  
Vol 6 (3) ◽  
pp. 175-179
Author(s):  
Chan Tiel ◽  
Felipe Kenji Sudo ◽  
Carlos Eduardo Oliveira Alves ◽  
Gilberto Sousa Alves ◽  
Letice Ericeira-Valente ◽  
...  

ABSTRACT Background: Neuropsychiatric symptoms are common in patients with cognitive impairments, mediated by both neurodegenerative processes and cerebrovascular disease. Previous studies have reported that Behavioral and Psychological Symptoms of Dementia (BPSD) might correlate with severity of cognitive decline. Thus far, the impact of the association between white-matter hyperintensities (WHM) and hippocampal atrophy (HA) on the incidence of these symptoms has been less studied. Objective: This cross-sectional study aimed to describe the clinical profile of a sample with large extensions of WMH, examining the association between different degrees of HA and cognitive, functional, and behavioral status. Methods: Fifty outpatients (mean age: 76.86±8.70 years; 58% female; mean schooling: 7.44±4.69 years) with large extensions of WMH (modified-Fazekas scale=3) on MRI and different degrees of hippocampal atrophy (according to de Leon Score) underwent cognitive, functional, and behavioral assessments. Results: Patients with mild-moderate to severe HA had worse performance on the Mini-Mental State Examination, Cambridge Cognitive Examination, Clinical Dementia Rating and Pfeffer's Functional Activities Questionnaire, compared to the group with none or questionable HA. Appetite/Eating Behavior was the only cluster of neuropsychiatric symptoms associated with presence of HA in Vascular Cognitive Impairment patients. Discussion: Although HA may exhibit distinct impact on cognitive performance and functional status, it appears to have little effect on behavioral symptoms in patients with high severity WMH.


2009 ◽  
Vol 21 (6) ◽  
pp. 1026-1030 ◽  
Author(s):  
C. Ballard ◽  
M. Margallo-Lana ◽  
J. T. O'Brien ◽  
I. James ◽  
R. Howard ◽  
...  

The majority of people with dementia develop behavioral and psychological symptoms of dementia (BPSD) at some point during their illness (Jeste et al., 2008). These symptoms, which are especially common among care home residents, are frequently distressing for the patients who experience them (Gilley et al., 2006; Jeste et al., 2008) and problematic for their professional and/or family caregivers. The starting point for our paper “Quality of life for people with dementia living in residential and nursing home care: the impact of performance on activities of daily living, behavioral and psychological symptoms, language skills, and psychotropic drugs” (Ballard et al., 2001) was to try and understand the impact of BPSD, function and language skills on quality of life in care home residents with dementia. Although there were frequent statements in previous work referring to the capacity of psychiatric and behavioral symptoms to reduce quality of life, we had been unable to identify any empirical evidence to support this clinical impression in a thorough literature review. The parallel validation of Dementia Care Mapping (DCM), predominantly a practice development tool, as an observational measure of well-being/quality of life (Kitwood and Bredin, 1997; Fossey et al., 2002) provided an excellent opportunity to examine this issue in a care home setting. The study focused on 209 people with dementia living in residential and nursing home care in north-east England in the U.K., who received a detailed assessment of BPSD, function and cognition. A DCM evaluation was completed for 112 of these individuals, providing a detailed observational measure of well-being, activities and social withdrawal as indices of quality of life over a six-hour daytime period. To our surprise, there was actually no association between well-being, social withdrawal or activities and BPSD. In contrast, there was a significant association between antipsychotic medication and reduced well-being, social withdrawal and activities respectively, even after controlling for the severity of behavioral disturbance. Using an arbitrary definition of “ill-being”, defined as a well-being score of less than zero, 5% of people not taking antipsychotics, 10% of people taking atypical antipsychotics and 22% of people taking typical antipsychotics were defined as having ill-being. Lower levels of functional ability were also associated with significantly lower well-being, less activities and more social withdrawal. At first this latter finding appears to be contrary to one of the central principles of DCM – namely, that the assessment should be independent of dementia severity. Although high levels of well-being and engagement are possible for people with severe dementia, this probably requires higher staff numbers and a workforce with more specialized skills in order to achieve this.


2012 ◽  
Vol 24 (10) ◽  
pp. 1536-1552 ◽  
Author(s):  
Katherine Ornstein ◽  
Joseph E. Gaugler

ABSTRACTBackground: Behavioral and psychological symptoms of dementia (BPSDs) are routinely cited as important predictors of caregiver burden and depression. Although BPSDs include a wide variety of patient behaviors, they are routinely grouped together as one construct to differentiate them from cognitive symptoms of dementia. Determining the specific BPSDs that result in increased depression and burden for caregivers may elucidate the stress process for caregivers and facilitate the development of effective interventions for caregivers.Methods: We conducted a systematic review of English-language articles published from 1990 to 2010 to determine whether there are known symptoms or symptom clusters which exert undue negative impact on caregiver depression and burden. Additionally, we review systems used for classifying BSPD symptom clusters and determine whether there have been any mechanisms studied by which individual BPSD symptoms negatively affect caregivers. Finally, we examine how the role of timing of symptoms has been examined within the literature.Results: Thirty-five original research articles examined the impact of an individual behavior symptom on caregiver burden or depression/depressive symptoms. The studies had no consistent system for categorizing symptoms. Although depression, aggression, and sleep disturbances were the most frequently identified patient symptoms to impact negatively on caregivers, a wide range of symptoms was associated with caregiver burden and depression.Conclusions: The evidence is not conclusive as to whether some symptoms are more important than others. The studies reviewed were largely exploratory relative to the differential impact of individual BPSDs and did not focus on testing causal mechanisms by which specific symptoms exert more impact on caregiver mental health than others. Future research may benefit from the re-conceptualization of BPSDs from the perspective of their impact on the caregiver to examine hypothesis-driven differences among BPSD symptom clusters.


Sign in / Sign up

Export Citation Format

Share Document