Moving in: adjustment of people living with dementia going into a nursing home and their families

2013 ◽  
Vol 25 (6) ◽  
pp. 867-876 ◽  
Author(s):  
Laura Sury ◽  
Kim Burns ◽  
Henry Brodaty
Keyword(s):  
Nursing Home ◽  
Family Caregivers ◽  
Longitudinal Research ◽  
Search Terms ◽  
People With Dementia ◽  
Difficult Time ◽  
Buddy System ◽  
Intervention Trials ◽  
Person With Dementia ◽  
Person Centered Approach

ABSTRACTBackground: Most people with dementia in Western societies will eventually be placed in a nursing home. This can be stressful to those with dementia and to their families. The adjustment to this new caring environment by both residents and their family caregivers and the factors that influence this are the focus of this review.Methods: A literature search of Embase, Scopus, and Medline databases of articles published in English between 1990 and 2011 using specified search terms was performed to examine this transition. The 174 titles located were screened and reference lists hand searched resulting in the 49 relevant articles included in this review.Results: This decision and the subsequent adjustment period is a difficult time for people with dementia and their family caregivers. Admission has been linked to increased behavioral symptoms and in particular depression and agitation, decreasing cognition, frailty, and falls in people with dementia. For caregivers, guilt, depression, feelings of failure, and continuing burden but also improvement in quality of life have been variously reported. Research to determine what influences the trajectory of these different outcomes and the prevalence of positive outcomes for people with dementia is lacking. Successful transitions may be assisted by ensuring that the person with dementia has input into decision making, orientation procedures for the person with dementia and family member prior to and on admission, a “buddy” system for new arrivals, and a person-centered approach.Conclusions: Adjustment to admission to residential care can be difficult for people with dementia and their family caregivers. Longitudinal research examining factors influencing the adjustment can provide a basis for intervention trials to improve this transition.

scholarly journals The relationship between guilt feelings, conflicts with staff and satisfaction with care in relatives of nursing home residents with dementia: A longitudinal analysis

Dementia ◽  
2021 ◽  
pp. 147130122110240
Author(s):  
Laura Gallego-Alberto ◽  
Hanneke JA Smaling ◽  
Anneke L Francke ◽  
Tim van de Brug ◽  
Jenny T van der Steen ◽  
...  
Keyword(s):  
Nursing Home ◽  
Family Caregivers ◽  
Mixed Model ◽  
Linear Mixed Model ◽  
Nursing Home Residents ◽  
Satisfaction With Care ◽  
People With Dementia ◽  
Person With Dementia ◽  
The Impact ◽  
Over Time

Introduction Family caregivers often experience guilt after nursing home placement. The aim of the present study was to describe family caregivers’ guilt over time and assess the impact of conflicts with staff and satisfaction with care on guilt. Method Data of 222 family caregivers at three assessments during one-year follow-up were used. In addition to caregivers’ guilt and the variables conflicts with staff and satisfaction with the care, potential confounders were measured: sociodemographic data, clinical characteristics of the person with dementia, and caregiver burden. Linear mixed model analyses were performed to examine the longitudinal relationships between variables. Results Guilt remained stable over time. Unadjusted models showed that conflicts with staff were positively associated with guilt ( β = 0.11; p < 0.001; 95% CI: 0.06 to 0.16) and satisfaction with care showed a negative association with guilt ( β = −0.10; p< 0.05; 95% CI: −0.18 to −0.01). After adjusting for the confounders, only the positive association of guilt with conflicts with staff was similar as in the unadjusted analysis ( β = 0.11; p < 0.001; 95% CI: 0.05 to 0.16), whereas satisfaction with care was not significantly associated with guilt in the adjusted analyses ( β = −0.07; p = 0.10; 95% CI: −0.16 to 0.01). Discussion More conflicts with staff are associated with stronger guilt feelings. Guilt feelings are experienced by caregivers even after the admission of the person with dementia, and they remain stable over time. Further studies should focus on how to address guilt in family caregivers of people with dementia living in nursing homes.

Depressive and Anxious Comorbidity and Treatment Response in Family Caregivers of People with Dementia

2021 ◽  
pp. 1-11
Author(s):  
Rosa Romero-Moreno ◽  
María Márquez-González ◽  
Samara Barrera-Caballero ◽  
Carlos Vara-García ◽  
Javier Olazarán ◽  
...  
Keyword(s):  
Depressive Symptoms ◽  
Family Caregivers ◽  
Behavioral Therapy ◽  
Anxiety Symptoms ◽  
Control Group ◽  
People With Dementia ◽  
Acceptance And Commitment ◽  
Randomized Intervention ◽  
Treatment Responses ◽  
Intervention Trials

Background: While most intervention studies conducted with dementia family caregivers have focused on depressive symptoms as the main outcome, no study has analyzed the effects of an intervention on comorbid clinical presentations of depressive and anxious symptomatology. Objective: The aim of this study was to examine the association between clinical depressive and anxious symptomatology at baseline and treatment responses of dementia family caregivers using samples from two randomized intervention trials with the same pre-post design. Methods: Specifically, the effects on depressive and anxious comorbidity of three intervention conditions (Cognitive Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT), and a control group (CG)) were analyzed. Participants were 130 dementia family caregivers. In addition to sociodemographic variables, depressive and anxious symptomatology were measured. Results: Caregivers with clinical depressive and anxiety comorbid symptoms at baseline recovered less well from depressive symptoms after CBT (45.45%) and ACT (47.72%) interventions than caregivers with non-comorbidity (100%recovery in both treatments). No significant association between comorbidity and treatment responses on depression was found for the control group. Regarding anxiety, among participants with comorbidity at baseline, 36.36%of caregivers in CBT and 30.9 %in the ACT group recovered from anxiety symptoms after treatment, compared to 6.45%in the control group. Similar results were obtained regarding those who recovered both from clinical depressive and anxiety symptoms and showed comorbidity at baseline. Conclusion: Caregivers that show comorbid depressive and anxiety symptoms at baseline may benefit less from interventions than caregivers who do not show comorbidity.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

2021 ◽  
pp. 019394592110557
Author(s):  
Melissa L. Harris ◽  
Marita G. Titler
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Behavioral Responses ◽  
Well Being ◽  
Comparative Methods ◽  
People With Dementia ◽  
Effective Care ◽  
Exploratory Approach ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

Although behavioral and psychological symptoms are burdensome for people with dementia and their caregivers, perceptions of family caregivers regarding management of these symptoms are unclear. This study explored the experiences of family caregivers regarding behavioral and psychological symptoms experienced by relatives with dementia, management of these symptoms, and changes in their experiences during the COVID-19 pandemic. A qualitative, exploratory approach using constant comparative methods was used; 21 family caregivers were interviewed virtually. The following 10 major themes emerged: (1) Emotional and psychological experiences of caregiver, (2) emotional, psychological, and behavioral responses of person with dementia, (3) cognition of person with dementia, (4) loss, (5) concerns for the future, (6) reliance, (7) learning to caregive, (8) rewarding aspects of caregiving, (9) caregiver perspectives, and (10) care strategies. Caregivers described many challenges to care before and during the pandemic. Acceptable and effective care strategies are needed to promote the well-being of families living with dementia.

The effects of a multi-component dyadic intervention on the psychological distress of family caregivers providing care to people with dementia: a randomized controlled trial

2015 ◽  
Vol 27 (12) ◽  
pp. 2031-2044 ◽  
Author(s):  
Anna-Eva Prick ◽  
Jacomine de Lange ◽  
Jos Twisk ◽  
Anne Margriet Pot
Keyword(s):  
Randomized Controlled Trial ◽  
Physical Exercise ◽  
Family Caregivers ◽  
Controlled Trial ◽  
Skills Training ◽  
Community Dwelling ◽  
Randomized Controlled ◽  
People With Dementia ◽  
The Us ◽  
Person With Dementia

ABSTRACTBackground:Earlier research showed that multi-component dyadic interventions – including a combination of intervention strategies and addressing both the person with dementia and caregiver – have a beneficial impact on the mental and physical health of people with dementia and their family caregivers. A randomized controlled trial (RCT) of a multi-component dyadic intervention, which is a translated and adapted version of an intervention that has been shown to be effective in the US by Teri et al. (2003), was performed. The effects on caregivers’ mood (primary outcome), burden, general health, and salivary cortisol levels (secondary outcomes) were studied.Methods:Community-dwelling people with dementia and their family caregivers (N = 111 dyads) were randomly assigned. The experimental group received eight home visits during three months, combining physical exercise and support (psycho-education, communication skills training, and planning of pleasant activities). Both the physical exercise and support component were directed at both the person with dementia and the caregiver. The comparison group received monthly information bulletins and phone calls. There were three measurements at baseline (prior to the intervention), at three months, and at six months into the intervention. Data were analyzed with Generalized Estimating Equations (GEE) based on an intention-to-treat analysis of all available data.Results:All analyses showed no benefits of the intervention over time on any of the outcomes.Conclusion:The negative results might be explained by the translation and adaptation of the intervention that has been shown to be effective in the US: the intervention was shortened and did not include cognitive reframing. However, only the health effects on people with dementia and not on caregivers were studied in the US. Several other factors might also have played a role, which are important for future studies to take into account. These are: the usual health care in the country or region of implementation; the wishes and needs of participants for specific intervention components; the room for improvement regarding these components; the inclusion of positive outcome measures, such as pleasure, and the quality of the relationship.

scholarly journals Exploring the contribution of housing adaptations in supporting everyday life for people with dementia: a scoping review

2021 ◽  
pp. 1-27
Author(s):  
Rita Newton ◽  
Sue Adams ◽  
John Keady ◽  
Emmanuel Tsekleves
Keyword(s):  
Everyday Life ◽  
Scoping Review ◽  
Daily Living ◽  
Positive Impact ◽  
Trial And Error ◽  
Inclusion Criteria ◽  
Search Terms ◽  
People With Dementia ◽  
Physical Limitations ◽  
Person With Dementia

Abstract The primary aim of this scoping review was to explore the contribution of housing adaptations to supporting everyday life for people with dementia living at home in the community. The study adopted a scoping review methodology which was guided by the Joanna Briggs Institute Reviewers Manual. Four review questions were developed which subsequently informed the inclusion criteria and search terms. Eight databases were searched resulting in 2,339 records, with 13 papers being included in the review. Evidence from the review found that the most common adaptations were recommended and/or implemented to compensate for a person's physical limitations and for safety reasons, rather than adaptations to support activities of daily living for a person with dementia. Support to implement adaptations was provided by a range of professionals coupled with ‘trial and error’ approaches adopted by the person themselves, and these were seen as key enablers. Barriers to implementing and using adaptations were fourfold: (a) access to information, (b) knowing when to make changes, (c) carer resistance, and (d) the unsuitability of the home. It would appear that housing adaptations have a positive impact on both the person with dementia and the carer (where one is present), with some adaptations having a relatively sustained impact and being particularly effective if implemented early in the lived trajectory of dementia.

scholarly journals Alzheimer’s Disease Caregiver Characteristics and Their Relationship with Anticipatory Grief

2021 ◽  
Vol 18 (16) ◽  
pp. 8838
Author(s):  
Alba Pérez-González ◽  
Josep Vilajoana-Celaya ◽  
Joan Guàrdia-Olmos
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Caregivers ◽  
Depressive Symptomatology ◽  
Anticipatory Grief ◽  
Cross Sectional ◽  
Sociodemographic Data ◽  
People With Dementia ◽  
Cross Sectional Design ◽  
Person With Dementia

In Alzheimer’s disease, two fundamental aspects become important for caregivers: ambiguity and ambivalence. Thus, anticipatory grief is considered an active psychological process that is very different from the mere anticipation of death. The present study aims to determine which characteristics of family caregivers of people with dementia, such as age, gender, educational level, relationship with the person with dementia, years with dementia or years as a caregiver, are related to the presence of anticipatory grief. A cross-sectional design was employed. The sample consisted of a total of 129 subjects who cared for a family member with dementia. A sociodemographic data sheet and a battery of tests measure the presence of anticipatory grief, caregiver burden and/or psychopathology. The results obtained allowed us to confirm some of the hypotheses regarding the anticipatory grief construct, the importance of the care time factor, in years and per day, as well as the relevance of the previous demographic and psychopathological profile (being female, spouse function and possible depressive symptomatology). Likewise, from the prediction analyzes performed, it seems that these variables can predict anticipatory grief. These results propose interesting opportunities to formulate care proposals to professionals and family caregivers in relation to care tasks and caregiver skills.

scholarly journals Online Self-Management Support for Family Caregivers Dealing With Behavior Changes in Relatives With Dementia (Part 2): Randomized Controlled Trial

10.2196/13001 ◽  
2020 ◽  
Vol 22 (2) ◽  
pp. e13001 ◽  
Author(s):  
Judith G Huis in het Veld ◽  
Bernadette M Willemse ◽  
Iris FM van Asch ◽  
Rob BM Groot Zwaaftink ◽  
Paul-Jeroen Verkade ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Controlled Trial ◽  
Self Management ◽  
Behavior Changes ◽  
Management Support ◽  
Support Intervention ◽  
People With Dementia ◽  
Online Videos ◽  
Person With Dementia

Background Online contacts with a health professional have the potential to support family caregivers of people with dementia. Objective The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention—involving among others personal email contacts with a dementia nurse—was compared with online interventions without these email contacts. Methods A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers’ self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers’ reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. Results Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference –0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference –4.21, P=.09) and at T1 (difference –4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. Conclusions The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required. Trial Registration Netherlands Trial Registry NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC) International Registered Report Identifier (IRRID) RR2-10.2196/resprot.8365

scholarly journals Professional caregivers’ knowledge, beliefs and attitudes about awareness in advanced dementia: a systematic review of qualitative studies

2019 ◽  
Vol 31 (11) ◽  
pp. 1599-1609 ◽  
Author(s):  
H. Rice ◽  
R. Howard ◽  
J. Huntley
Keyword(s):  
Systematic Review ◽  
Internal State ◽  
Qualitative Studies ◽  
Exact Nature ◽  
Advanced Dementia ◽  
Search Terms ◽  
People With Dementia ◽  
Professional Caregiver ◽  
Person With Dementia ◽  
Beliefs And Attitudes

ABSTRACTObjectives:Awareness can be defined as a response to, or evaluation of, an aspect of one’s situation or internal state. Awareness becomes impaired as dementia progresses; however, the exact nature and degree of impairment in advanced dementia remains unclear. The extent to which caregivers understand or make assumptions about the level and nature of awareness in advanced dementia may have a significant impact on their ability to appropriately respond to and care for the person with dementia. This systematic review examines the literature regarding professional caregiver perceptions about awareness in advanced dementia.Design:A systematic search of online literature databases (PsychInfo, Medline, Embase, CINAHL) was conducted up to January 15, 2018, using a range of search terms related to dementia, awareness and caregiver attitudes.Results:The systematic review included a total of 10 qualitative studies that were heterogeneous in aspects of design, including analyses. Narrative synthesis was used to integrate results. Four major themes were identified from review of the papers: how professional caregivers defined awareness; professional caregiver beliefs about what influences the expression of awareness; professional caregiver beliefs around how to assess awareness in advanced dementia; and the perceived impact of episodes of increased awareness on the person with dementia and caregiver. Sub-themes were identified within each of these areas.Conclusion:This review highlights the importance of professional caregiver perceptions of awareness in advanced dementia. Supporting professional caregivers to assess and understand the nature of awareness in advanced dementia would improve their approach to care and outcomes for people with dementia.

scholarly journals Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study

JMIR Aging ◽  
10.2196/24965 ◽  
2021 ◽  
Vol 4 (1) ◽  
pp. e24965
Author(s):  
Magaly Ramirez ◽  
Miriana C Duran ◽  
Chester J Pabiniak ◽  
Kelly E Hansen ◽  
Ann Kelley ◽  
...  
Keyword(s):  
Health Care ◽  
Training Program ◽  
Family Caregivers ◽  
Psychological Symptoms ◽  
Challenging Behaviors ◽  
Care Organization ◽  
Virtual Training ◽  
People With Dementia ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

Background Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. Objective The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Methods Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. Results The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Conclusions Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.

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