Why do patients and their families not use services for dementia? Perspectives from a developed Asian country

2012 ◽  
Vol 24 (10) ◽  
pp. 1571-1580 ◽  
Author(s):  
June Lim ◽  
Jenny Goh ◽  
Hui Ling Chionh ◽  
Philip Yap
Keyword(s):  
Family Caregivers ◽  
Problem Behaviors ◽  
Service Use ◽  
Asian Country ◽  
Community Services ◽  
Future Research ◽  
Levels Of Care ◽  
Use Of Services ◽  
Domestic Help ◽  
Separate Regression

ABSTRACTBackground: Despite the need for community services to support the intensive levels of care provided by dementia family caregivers, findings consistently indicate low rates of service utilization. This study aims to explore the extent of service use and examine the factors that may influence the use of services in a sample of family caregivers of Persons With Dementia (PWD).Methods: Two hundred and seventy-two family caregivers completed a questionnaire assessing caregiver burden, knowledge and use of services, dementia severity, frequency of problem behaviors and socio-demographic characteristics.Results: The rate of service use was modest with 39.9% using any of the available services. Reasons for non-use included lack of time (26.2%), perceived lack of need (18.5%), and presence of domestic help (21%). Separate regression models were evaluated to identify factors associated with caregiver service use and PWD service-use. Caregiver employment status (OR = 0.53, CI = 0.30–0.94) and knowledge of available services (OR = 4.22, CI = 2.23–7.98) contributed significantly to the model distinguishing caregiver service users from non-users. Knowledge of available services (OR = 2.14, CI = 1.23–3.71) was the only significant predictor of service use targeted at the PWD.Conclusions: Given that knowledge significantly increased the odds of service use, strategies should be designed to raise awareness about the availability of dementia support services in the community and provide a deeper understanding about the value of such services. Future research should employ larger sample sizes and explore factors not measured in this study that might potentially better explain use of services.

scholarly journals When the Day Goes Awry: Families Caring for Persons With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 638-639
Author(s):  
Karen Roberto ◽  
Jyoti Savla ◽  
Steven Zarit
Keyword(s):  
Family Caregivers ◽  
Rural Areas ◽  
Service Use ◽  
Management Strategies ◽  
Care Quality ◽  
Future Research ◽  
Full Time ◽  
Daily Lives ◽  
Formal Service ◽  
Formal Services

Abstract The daily lives of family caregivers of persons with dementia (PwD) often require that they manage multiple competing demands in a context of unpredictability. Memory and behavior changes associated with dementia can cause PwD to act in random and irrational ways that create stress and influence all aspects of caregivers’ everyday life. Supportive others, including informal helpers and formal service professionals, should provide relief to primary caregivers; however, help may not alleviate caregiver stress and can sometimes compound the burden of care. This symposium draws on daily diary surveys and face-to-face interviews to focus on four aspects of managing everyday care of PwD among family caregivers in rural areas. Brandy Renee McCann explores how caregivers’ vigilance on behalf of PwD care quality interacts with service use. Karen Roberto examines the ways in which caregivers manage PwD resistance to help, including their use of forceful care strategies. Rosemary Blieszner focuses on competing caregiver roles and demands that may contribute to or alleviate caregiver stress. Tina Savla addresses the unexpected, and often hidden, challenges involved in using formal services. Collectively, the four presentations provide in-depth insight into the complicated daily lives of families coping with dementia and the ways in which they meet the demands of full-time caregiving under often difficult and challenging circumstances. Discussant Steve Zarit considers the efficacy of these management strategies for various aspects of everyday care and offers suggestions for future research and person-centered programs and interventions to reduce health disparities among caregivers in rural areas.

scholarly journals Home and Community Based Service Use Among Veterans With Dementia Living in Rural Virginia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 108-109
Author(s):  
Jyoti Savla ◽  
Mamta Sapra ◽  
Lauren Hagemann ◽  
Katherine Luci
Keyword(s):  
Family Caregivers ◽  
Support Groups ◽  
Service Use ◽  
Behavioral Model ◽  
Community Services ◽  
Health Care Facilities ◽  
Caregiver Support ◽  
Home Based ◽  
Adult Day Centers ◽  
Using Data

Abstract Despite the overall expansion of rural Veteran health care facilities, older Veterans in these areas are still underserved and face challenges and barriers to access services. Using data from 60 family caregivers of persons with dementia (PwD; Mean Age = 67 years, Range = 39-84; 92% White; 71% Spouse) we examined the types of home-based and community services they utilized. We also examined reasons that family caregivers provided for not using these services. Next, we applied Andersen's Behavioral Model of Health Services to examine how predisposing factors such as demographics, available resources, and PwD’s needs were associated with the use of services. We found that Veterans living in rural counties had lower access to caregiver support groups, homemaker services, adult day centers, and home-based respite services. The top three reasons for not using services were that the family caregiver chose to do it themselves, the PwD did not want the service or the service provider to help, or it was too far from the caregiver’s home. Regression analysis further showed that caregivers caring for PwDs with greater ADL challenges and memory and behavior problems were more likely to need and utilize paid services. Disparities based on gender, age, and race were also explored. Findings suggest the need to develop effective service promotion strategies and destigmatizing the use of paid services among Veteran families to reduce health disparities in rural regions.

scholarly journals Perceptions of Family Caregivers of People With Dementia Regarding Symptom Management and the COVID-19 Pandemic

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 154-155
Author(s):  
Melissa Harris ◽  
Marita Titler
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Community Services ◽  
Community Dwelling ◽  
Care Recipient ◽  
Future Research ◽  
Service Access ◽  
Psychological Responses ◽  
People With Dementia ◽  
The Impact

Abstract Nearly 98% of older adults with Alzheimer’s disease and related dementias (ADRD) experience behavioral and psychological symptoms of dementia (BPSD). Although BPSD are linked to caregiver burden, perceptions of family caregivers on the impact of BPSD and their experiences addressing them in the home are unclear, and little is known about the impact of the pandemic on these experiences. Study aims were to explore: 1) the experiences of family caregivers of community dwelling older adults with ADRD regarding BPSD and how they manage BPSD in the home, and 2) how the pandemic impacted family caregivers’ experiences, BPSD of their relatives, and BPSD management. A qualitative, exploratory approach was used; 21 family caregivers were interviewed virtually. Content analysis and constant comparative methods were used. Ten major themes emerged: 1) Emotional and psychological responses of caregiver, 2) Loss, 3) Anticipation, 4) Reliance, 5) Learning to caregive, 6) Rewarding, 7) Emotional and psychological responses of care recipient 8) Cognition of care recipient, 9) Care strategies, 10) Caregiver perspectives. Caregivers did not use terms “behaviors” or “symptoms”, instead they described their relatives’ and their own experiences interdependently. Caregiving challenges presented before the pandemic (e.g. equivocal effects of medications, increasing care demands), many of which were compounded by the pandemic. Future research should explore the experiences of caregivers from a range of backgrounds. Findings illustrate communication barriers exist between clinicians, community services, people with ADRD and their families which may be addressed through clinician education, family-centered care planning, and policies to expand support service access.

scholarly journals Changes in daily mental health service use and mortality at the commencement and lifting of COVID-19 ‘lockdown’ policy in 10 UK sites: a regression discontinuity in time design

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e049721
Author(s):  
Ioannis Bakolis ◽  
Robert Stewart ◽  
David Baldwin ◽  
Jane Beenstock ◽  
Paul Bibby ◽  
...  
Keyword(s):  
Mental Health ◽  
Inpatient Care ◽  
Service Use ◽  
Regression Discontinuity ◽  
Mental Healthcare ◽  
Service Level ◽  
Community Services ◽  
Mental Health Service Use ◽  
Healthcare Data ◽  
Early Intervention In Psychosis

ObjectivesTo investigate changes in daily mental health (MH) service use and mortality in response to the introduction and the lifting of the COVID-19 ‘lockdown’ policy in Spring 2020.DesignA regression discontinuity in time (RDiT) analysis of daily service-level activity.Setting and participantsMental healthcare data were extracted from 10 UK providers.Outcome measuresDaily (weekly for one site) deaths from all causes, referrals and discharges, inpatient care (admissions, discharges, caseloads) and community services (face-to-face (f2f)/non-f2f contacts, caseloads): Adult, older adult and child/adolescent mental health; early intervention in psychosis; home treatment teams and liaison/Accident and Emergency (A&E). Data were extracted from 1 Jan 2019 to 31 May 2020 for all sites, supplemented to 31 July 2020 for four sites. Changes around the commencement and lifting of COVID-19 ‘lockdown’ policy (23 March and 10 May, respectively) were estimated using a RDiT design with a difference-in-difference approach generating incidence rate ratios (IRRs), meta-analysed across sites.ResultsPooled estimates for the lockdown transition showed increased daily deaths (IRR 2.31, 95% CI 1.86 to 2.87), reduced referrals (IRR 0.62, 95% CI 0.55 to 0.70) and reduced inpatient admissions (IRR 0.75, 95% CI 0.67 to 0.83) and caseloads (IRR 0.85, 95% CI 0.79 to 0.91) compared with the pre lockdown period. All community services saw shifts from f2f to non-f2f contacts, but varied in caseload changes. Lift of lockdown was associated with reduced deaths (IRR 0.42, 95% CI 0.27 to 0.66), increased referrals (IRR 1.36, 95% CI 1.15 to 1.60) and increased inpatient admissions (IRR 1.21, 95% CI 1.04 to 1.42) and caseloads (IRR 1.06, 95% CI 1.00 to 1.12) compared with the lockdown period. Site-wide activity, inpatient care and community services did not return to pre lockdown levels after lift of lockdown, while number of deaths did. Between-site heterogeneity most often indicated variation in size rather than direction of effect.ConclusionsMH service delivery underwent sizeable changes during the first national lockdown, with as-yet unknown and unevaluated consequences.

The Socialization of Unpaid Family Caregivers: A Scoping Review

2021 ◽  
pp. 016402752110050
Author(s):  
Kirstie McAllum ◽  
Mary Louisa Simpson ◽  
Christine Unson ◽  
Stephanie Fox ◽  
Kelley Kilpatrick
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Scoping Review ◽  
Family Caregiving ◽  
Family Processes ◽  
Future Research ◽  
Socialization Process ◽  
Role Negotiation ◽  
Role Learning ◽  
Socialization Agents

As unpaid family caregiving of older adults becomes increasingly prevalent, it is imperative to understand how family caregivers are socialized and how they understand the caregiving role. This PRISMA-ScR-based scoping review examines the published literature between 1995–2019 on the socialization of potential and current unpaid family caregivers of older adults. Of 4,599 publications identified, 47 were included. Three perspectives of socialization were identified: (1) role acculturation; (2) role negotiation and identification; and (3) specialized role learning. The findings show how socialization involves different contexts (e.g., cultures), imperatives for action (e.g., circumstances), socialization agents (e.g., family), processes (e.g., modeling), and internal (e.g., normalization) and external (e.g., identification) consequences for caregivers. Future research could fruitfully explore how caregivers manage key turning points within the socialization process, disengage from the caregiving role, and negotiate the socialization and individualization processes within diverse cultural and funding contexts.

scholarly journals EXPLORING RACIAL-ETHNICITY DIFFERENCES IN SERVICES USED BY GRANDPARENTS RAISING GRANDCHILDREN

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S674-S674
Author(s):  
Tamar E Shovali ◽  
Kerstin G Emerson
Keyword(s):  
Financial Services ◽  
Service Use ◽  
Community Services ◽  
White Children ◽  
Formal Service ◽  
Service Accessibility ◽  
The Us ◽  
Formal Services ◽  
Race Ethnicity ◽  
Nationally Representative

Abstract Nearly three million grandparents in the US serve as primary caregivers for their grandchildren. Little research on formal service use and grandfamilies exists for Black and Hispanic populations. To begin to address this gap we conducted exploratory analyses using nationally representative estimates of characteristics and service accessibility of noninstitutionalized children living with grandparents from the 2013 National Survey of Children in Nonparental Care. Our goal was to understand differences in service use as a function of grandfamily race/ethnicity. We specifically explored grandparents’ formal service count, financial services received, confidence in obtaining/using community services, and level of role preparation by race/ethnicity. We calculated descriptive statistics for these service variables for grandparents raising Hispanic, White, Black, and Other identified grandchildren (N = 892). On average, there was a minimal range for the number of formal services used (M range = 5.26 – 5.84, possible = 0 – 10 higher equals more services used), reported number of financial services (M range = 0.71 - 0.78, possible = 0 – 3 higher equals more financial services received), and confidence obtaining/using services (M range = 7.4—7.9, possible = 1 – 9 higher equal more confidence). Most prepared to take on the caregiving role were grandparents of White children (55%) followed by Black (21.6%), Other (12.3%), and Hispanic (11.1%) indicating that although grandparents in this sample report being confident and able to access formal services, grandparents of White children report being feeling more prepared to take on caregiving than grandparents of Black, Hispanic, and Other combined.

Examining bidirectional relationships between parenting and child maladjustment in youth with autism spectrum disorder: A 9-year longitudinal study

2016 ◽  
Vol 29 (4) ◽  
pp. 1199-1213 ◽  
Author(s):  
Lisa M. Dieleman ◽  
Sarah S. W. De Pauw ◽  
Bart Soenens ◽  
Wim Beyers ◽  
Peter Prinzie
Keyword(s):  
Autism Spectrum Disorder ◽  
Longitudinal Study ◽  
Problem Behaviors ◽  
Externalizing Problems ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Future Research ◽  
Controlling Parenting ◽  
Parents And Children ◽  
Child Problems

AbstractLongitudinal bidirectional effects between parents and children are usually studied in samples of typically developing children, but remain understudied in families with a child with autism spectrum disorder. This three-wave longitudinal study examined how parents and children with autism spectrum disorder influence one another, relying on parent reports of parenting behaviors and children's problem behaviors across 9 years, in a sample of 139 youngsters (M age Time 1 = 10.2 years, 83% boys). Cross-lagged analyses indicated that children's externalizing problems at Time 1 predicted negative controlling parenting 6 years later (Time 2) that in turn predicted externalizing problems 3 years later (Time 3). Negative parental control at Time 1 also increased the risk for internalizing problems at Time 2. It was surprising that externalizing problems at Time 2 also predicted positive parental involvement at Time 3. Thus, although results indicate that externalizing problems generally elicit maladaptive reactions in parents, this study also suggests that parents adjust their way of reacting to externalizing child problems as their child reaches adolescence/emerging adulthood. Implications for future research on parenting dynamics in families with a child with autism spectrum disorder are discussed.

Predictors of Emotional Distress in Family Caregivers of Persons with Traumatic Brain Injury: A Systematic Review

2013 ◽  
Vol 14 (1) ◽  
pp. 113-129 ◽  
Author(s):  
Angelle M. Sander ◽  
Kacey Little Maestas ◽  
Allison N. Clark ◽  
Whitney N. Havins
Keyword(s):  
Systematic Review ◽  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Family Caregivers ◽  
Emotional Distress ◽  
Future Research ◽  
Class Iii ◽  
Class B ◽  
Assessment And Treatment ◽  
Severe Tbi

The purpose of the current paper was to conduct a systematic review of the literature on predictors of emotional distress in caregivers of persons with traumatic brain injury (TBI), and to provide evidence-based classification for prognostic variables to guide future research and clinical practice. A search was conducted using PubMed, CINAHL and PsycINFO databases. The citations of resulting articles were also reviewed. Twenty-eight articles met inclusion criteria and were retained for review. Reviews were conducted in accordance with the 2011 edition of the American Academy of Neurology (AAN) Guidelines for classifying evidence for prognostic studies. Data abstraction revealed one Class I study, four Class II studies, eight Class III studies, and 15 Class IV studies. Results of the review indicated that caregivers’ report of neurobehavioural problems in the person with injury is a probable predictor of emotional distress for caregivers of persons with complicated mild, moderate or severe TBI (Class B evidence). The level of participation in the person with injury, level of support needed by the person with injury, and family systems functioning are probably predictors of emotional distress for caregivers of persons with severe TBI (Class B evidence). Executive functioning impairment in the person with injury, pre-injury emotional distress in caregivers, caregiver age, caregivers’ use of emotion-focused coping, and social support may possibly be risk factors for caregivers’ emotional distress (Class C evidence). Recommendations for future research and implications for assessment and treatment of family caregivers are discussed.

Assessing Teacher Manageability: A Factor Analytic Approach

1988 ◽  
Vol 13 (4) ◽  
pp. 245-252 ◽  
Author(s):  
Stephen P. Safran ◽  
Joan S. Safran ◽  
Robert S. Barcikowski
Keyword(s):  
Principal Component Analysis ◽  
Statistical Analysis ◽  
Problem Behaviors ◽  
Principal Component ◽  
Analytic Approach ◽  
Future Research ◽  
Maladaptive Behaviors ◽  
Varimax Rotation ◽  
Behaviorally Disordered ◽  
Factor Analytic

An ecologically valid appraisal of students' problem behaviors must include assessment of the teacher's role as perceiver on various levels. This study analyzes the teacher manageability construct, examining educators' beliefs about their ability to manage 39 generally maladaptive behaviors within their own classroom. To address measurement limitations of previous investigations (including nonfactor analytic clustering of behaviors), a principal component analysis followed by a varimax rotation was administered on teacher manageability ratings (N = 182). This statistical analysis yielded nine component subtests (the Teacher Manageability Scale) and demonstrated that by changing the method used to group behaviors, you also modify the structure of a teacher checklist. Lack of Communication was identified as the most difficult behavior to manage. Implications for professionals working with students identified as behaviorally disordered and for future research are discussed.

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