Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help

2015 ◽  
Vol 27 (6) ◽  
pp. 927-936 ◽  
Author(s):  
Lizzy M. M. Boots ◽  
Claire A. G. Wolfs ◽  
Frans R. J. Verhey ◽  
Gertrudis I. J. M. Kempen ◽  
Marjolein E. de Vugt
Keyword(s):  
Early Stage ◽  
Well Being ◽  
Therapeutic Interventions ◽  
Care Recipient ◽  
Positive Interaction ◽  
Dementia Caregivers ◽  
Personal Time ◽  
People With Dementia ◽  
Retrospective View ◽  
Group Interviews

ABSTRACTBackground:Early individualized interventions for informal dementia caregivers can prevent overburdening in the later stages. However, the needs of early-stage dementia caregivers (EDC) remain largely unknown. This study aimed to explore the needs and wishes and need for care of EDC to maximize the benefit of potential programs for EDC and tailor interventions accordingly.Methods:Four focus group interviews with 28 informal caregivers of people with dementia (PwD) were analyzed using inductive content analysis. Both EDC and caregivers in the later stages were included to compare perceived EDC needs from different points in the caregiver career.Results:Four themes were identified: the early-stage needs paradox, barriers in acceptance, facilitators in acceptance, and a transition from loss to adaptation. The retrospective view provided by later-stage caregivers differed from the view of EDC; EDC struggled with acknowledging needs due to fear of stigma and low acceptance. EDC stressed the importance of acceptance as a prerequisite for adequate adaptation, but were hindered by lack of knowledge, difficulty acknowledging changes, and focus on loss. In contrast, better understanding of the disease, increasing personal time, structuring ones day, and using appropriate humor can reduce negative communication, increase positive encounters and caregiver-confidence, contributing to positive interaction with the care recipient and an increase in well-being.Conclusions:Early therapeutic interventions could help caregivers identify their needs, increase knowledge about changes in roles and relationship reciprocity, and focus on enhancement of the positive, intact experiences to prevent caregiver burden.

Helping caregivers of persons with dementia: which interventions work and how large are their effects?

2006 ◽  
Vol 18 (4) ◽  
pp. 577-595 ◽  
Author(s):  
Martin Pinquart ◽  
Silvia Sörensen
Keyword(s):  
Behavioral Therapy ◽  
Meta Analysis ◽  
Well Being ◽  
Care Recipient ◽  
Subjective Well Being ◽  
Dementia Caregivers ◽  
Domain Specific ◽  
People With Dementia ◽  
The Individual ◽  
Multicomponent Interventions

Background: In recent years, many different forms of interventions for caregivers of people with dementia have been developed. However, their results have been, in part, inconclusive.Methods: Meta-analysis was used to integrate the results of 127 intervention studies with dementia caregivers published or presented between 1982 and 2005.Results: Interventions had, on average, significant but small effects on burden, depression, subjective well-being, ability/knowledge and symptoms of care recipient. Only multicomponent interventions reduced the risk for institu-tionalization. Psychoeducational interventions that require active participation of caregivers had the broadest effects. Effects of cognitive-behavioral therapy, support, counseling, daycare, training of care recipient, and multicomponent interventions were domain specific. The effect sizes varied by study chara-cteristics, such as caregiver gender and year of publication.Conclusions: Because most interventions have domain-specific outcomes, clinicians must tailor interventions according to the specific needs of the individual caregivers. Although more recent interventions showed stronger effects, there is room for further improvements in interventions.

scholarly journals Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study

2019 ◽  
Vol 8 (7) ◽  
pp. 203 ◽  
Author(s):  
Lethin ◽  
Hanson ◽  
Margioti ◽  
Chiatti ◽  
Gagliardi ◽  
...  
Keyword(s):  
Everyday Life ◽  
Early Stage ◽  
Well Being ◽  
Community Dwelling ◽  
Design Data ◽  
Living Well ◽  
People With Dementia ◽  
Trusting Relationships ◽  
Informal Carers ◽  
Group Interviews

The aim of this study was to describe the needs and expectations of support within everyday life among community-dwelling people living well with an early stage dementia and their informal carers. The study employed a qualitative design. Data were collected in 2018, via four focus group interviews with, in total, 17 people with dementia and 21 informal carers, transcribed and analyzed with manifest content analysis. Needs and expectations of support among persons with dementia were expressed as the importance of “Participation in my own care,” “Attitude of the informal carers,” and “Trusting relationships with informal carers.” Informal carers’ needs and expectations of support were expressed as the importance of “Formal care and services,” “Getting out of a carer mindset,” and “Family context.” The findings from this study highlighted that persons with dementia were well aware of their cognitive impairments and tried to maintain their independence, with both formal and informal care to help remain “being themselves.” Health professionals should acknowledge persons with dementia and informal carers’ well-being, and acknowledge the importance of their needs together with an understanding of the importance of continuity of frontline carers to building trusting relationships.

Moving through predeath grief: Psychological support for family caregivers of people with dementia

Dementia ◽  
2017 ◽  
Vol 18 (7-8) ◽  
pp. 2474-2493 ◽  
Author(s):  
Franziska Meichsner ◽  
Stefanie Köhler ◽  
Gabriele Wilz
Keyword(s):  
Qualitative Content Analysis ◽  
Behavioral Therapy ◽  
Controlled Trial ◽  
Well Being ◽  
Care Recipient ◽  
Physical And Mental Health ◽  
Dementia Caregivers ◽  
Loss And Grief ◽  
People With Dementia ◽  
Mental Health Interventions

When caring for a family member with dementia, continuous losses and predeath grief can adversely affect the caregivers’ physical and mental health. Interventions for caregivers should therefore also aim at coping with loss and managing predeath grief. It was the objective of the present study to describe sources of grief caregivers report during therapy and to investigate how therapists can support caregivers. Two caregivers who participated in a randomized controlled trial were selected for this case study. Both caregivers received an intervention based on the principles of cognitive-behavioral therapy with grief-focused content that consisted of 12 sessions within six months. Three therapy sessions per participant were transcribed, coded, and analyzed using qualitative content analysis. Results illustrate that both caregivers experienced a loss of companionship with their respective care recipient and ambiguous loss that resulted in intense grief that they found difficult to manage. Therapists responded by supporting the caregivers to acknowledge their losses and identify individual ways to cope with and accept loss and grief. Both caregivers reported higher well-being and an increased ability to manage their grief-related emotions after the therapy ended. The identified intervention strategies fit well into a theoretical framework for grief interventions for dementia caregivers, i.e. the dementia grief model.

scholarly journals Emotional Experiences of Dementia Caregiving Transitions

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 72-72
Author(s):  
Emily Ihara ◽  
Catherine Tompkins ◽  
William Kennedy ◽  
Rhea Vance-Cheng ◽  
Bianca Kwan ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Well Being ◽  
Emotional Experiences ◽  
Dementia Caregivers ◽  
Nursing Facility ◽  
Term Care ◽  
Group Interviews ◽  
Symptom Progression ◽  
Feeling Overwhelmed

Abstract Research indicates that family caregivers of individuals living with dementia are at risk for high levels of stress, depression, physical health declines, and illness. The health and well-being of family caregivers is critically important to a long-term care system that is dependent on them to continue their caregiving role. In-depth individual and focus group interviews of 16 dementia caregivers were conducted to explore the emotional experiences of caregiving stress during transitions of individuals living with dementia to a higher level of care. Data were transcribed verbatim, checked for accuracy, and analyzed by at least two members of the research team. Line-by-line coding, memo writing, and constant comparative analyses were conducted until redundancy, when no new themes were discovered. Caregivers described various levels of feeling overwhelmed and symptom progression leading to the move to a nursing facility. Social isolation featured prominently, with caregivers describing a gradual erosion of their social network and socializing opportunities because of their caregiving responsibilities and the care recipient’s deteriorating symptoms. Caregivers described feeling isolated and stigmatized. One caregiver said, “…you’re being less invited, you’re being less involved. People don’t know how to deal with you…I don’t know if they become the pariah or I become the pariah.” At the same time, maintaining social connections and having help with caregiving featured prominently in the coping mechanisms described. The health of caregivers is equally as important as the person living with dementia, and programs, interventions, and resources should be a priority for supporting families through transitions.

Identity, mood, and quality of life in people with early-stage dementia

2012 ◽  
Vol 24 (8) ◽  
pp. 1306-1315 ◽  
Author(s):  
Lisa S. Caddell ◽  
Linda Clare
Keyword(s):  
Quality Of Life ◽  
Positive Impact ◽  
Early Stage ◽  
Well Being ◽  
Cross Sectional ◽  
Early Stages ◽  
The People ◽  
People With Dementia ◽  
Relationship Of

ABSTRACTBackground: There is little empirical research regarding the relationships between identity and well-being in people with dementia. The aim of the study was to explore the relationship of identity with mood and quality of life (QoL) in the people in the early stages of dementia.Method: This was a cross-sectional questionnaire-based study. Fifty people in the early stages of dementia completed measures pertaining to different aspects of identity, mood, and QoL. Multiple regression analyses were carried out to determine whether it was possible to predict any of the variance in mood and QoL from aspects of identity.Results: It was possible to predict 12.8% of the variance in anxiety, 23.4% of the variance in depression, and 25.1% of the variance in QoL from different aspects of identity. Predictors varied for each dependent variable.Conclusions: Aspects of identity predict a modest proportion of the variance in anxiety, depression, and QoL. This suggests that supporting identity in people with dementia who are experiencing difficulties in this regard might have a positive impact on mood and QoL. However, the majority of the variance in mood and QoL must be accounted for by other variables.

The stages of driving cessation for people with dementia: needs and challenges

2013 ◽  
Vol 25 (12) ◽  
pp. 2033-2046 ◽  
Author(s):  
Jacki Liddle ◽  
Sally Bennett ◽  
Shelley Allen ◽  
David C. Lie ◽  
Bradene Standen ◽  
...  
Keyword(s):  
Health Professionals ◽  
Early Stage ◽  
Disease Process ◽  
Well Being ◽  
Driving Cessation ◽  
Safe Driving ◽  
Caregiver Support ◽  
People With Dementia ◽  
The Impact ◽  
Community Access

ABSTRACTBackground:The impact of dementia on safe driving is well recognized and is generally accepted that all people with dementia are likely to need to cease driving at some stage in the disease process. Both driving and driving cessation can have poor outcomes for people with dementia and their caregivers in terms of health, safety, community access, and well-being. Although approaches to facilitate better outcomes from driving cessation are being developed, the processes of driving cessation for people with dementia are still not fully understood.Methods:Within a descriptive phenomenological framework, semi-structured interviews were undertaken with key stakeholders, including retired drivers with dementia, family members, and health professionals.Results:Findings from four retired drivers with dementia, 11 caregivers, and 15 health professionals characterized driving cessation for people with dementia as a process with three stages and associated challenges and needs. The early stage involved worried waiting, balancing safety with impending losses, and the challenge of knowing when to stop. The crisis stage involved risky driving or difficult transportation, acute adjustment to cessation and life without driving, and relationship conflict. The post-cessation stage was described as a long journey with ongoing battles and adjustments as well as decreased life space, and was affected by the disease progression and the exhaustion of caregiver.Conclusions:The concept of stages of driving cessation for people with dementia could be used to develop new approaches or adapt existing approaches to driving cessation. Interventions would need to be individualized, optimally timed, and address grief, explore realistic alternative community access, and simultaneously maintain key relationships and provide caregiver support.

An analysis of carer burden among family carers of people with and without dementia in Ireland

2020 ◽  
pp. 1-12
Author(s):  
Áine Teahan ◽  
Attracta Lafferty ◽  
John Cullinan ◽  
Gerard Fealy ◽  
Eamon O’Shea
Keyword(s):  
Older People ◽  
Well Being ◽  
Self Report ◽  
Care Recipient ◽  
Family Carer ◽  
Family Carers ◽  
Dementia Diagnosis ◽  
Carer Burden ◽  
People With Dementia ◽  
Original Dataset

ABSTRACT Objective: Despite the policy relevance of carer burden, limited research focuses on family carers’ experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia. Design: Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care. Setting: The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland. Participants: The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia. Measurements: Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales. Results: In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (−6.95 ppts and −3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively). Conclusion: Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

scholarly journals Memory and communication support strategies in dementia: Effect of a training program for informal caregivers

2012 ◽  
Vol 24 (12) ◽  
pp. 1927-1942 ◽  
Author(s):  
Jacki Liddle ◽  
Erin R. Smith-Conway ◽  
Rosemary Baker ◽  
Anthony J. Angwin ◽  
Cindy Gallois ◽  
...  
Keyword(s):  
Training Program ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Training Group ◽  
Well Being ◽  
Care Recipient ◽  
Control Group ◽  
People With Dementia ◽  
Person With Dementia ◽  
The Impact

ABSTRACTBackground: People with dementia have a range of needs that are met by informal caregivers. A DVD-based training program was developed using research-based strategies for memory and communication in dementia. The effectiveness of the training on the caregiver experience and the well-being of the person with dementia was evaluated.Methods: A pre-test/post-test controlled trial was undertaken with caregiver–care-recipient dyads living in the community. Measures of the carers’ knowledge of memory and communication strategies, burden, positive perceptions of caregiving, and perceptions of problem behaviors were taken pre- and three months post-intervention. The depression and well-being of the person with dementia were also evaluated. Satisfaction with the training and feedback were measured.Results: Twenty-nine dyads (13 training group, 16 control group) participated. Bonferroni's correction was made to adjust for multiple comparisons, setting α at 0.00385. A significant improvement was found in caregivers’ knowledge for the training group compared to the control group (p = 0.0011). The training group caregivers reported a reduction in the frequency of care recipient disruptive behaviors (p = 0.028) and increased perceptions of positive aspects of caregiving (p = 0.039), both at a level approaching significance. The training group care recipients had increased frequency of verbally communicated depressive behaviors at a level approaching significance (p = 0.0126). The frequency of observed depressive behaviors was not significantly different between groups.Conclusions: This approach to training for caregivers of people with dementia appears promising for its impact on knowledge and the caregiving experience. Further research could monitor the impact of the training on broader measures of depression and well-being, with a larger sample.

scholarly journals Surviving and Thriving: Qualitative Results from a Multi-Year, Multidimensional Intervention to Promote Well-Being among Caregivers of Adults with Dementia

2021 ◽  
Vol 18 (9) ◽  
pp. 4755
Author(s):  
Meara H. Faw ◽  
India Luxton ◽  
Jennifer E. Cross ◽  
Deana Davalos
Keyword(s):  
Positive Emotions ◽  
Well Being ◽  
Relationship Building ◽  
Care Recipient ◽  
Dementia Caregivers ◽  
Multiple Dimensions ◽  
Personal Dignity ◽  
Engagement Interventions ◽  
Phenomenological Perspective ◽  
Arts Engagement

(1) Introduction: Caring for an adult with dementia is both challenging and rewarding. Research indicates that community-based, social support, and/or arts engagement interventions can play a key role in ameliorating the negative outcomes associated with caregiving while enhancing its more positive attributes. This study explores the psychosocial outcomes experienced by dementia caregivers who participated in a multi-year, multidimensional intervention aimed at promoting caregiver and care recipient well-being. This intervention included bringing caregivers and people with Alzheimer’s disease or related dementias (ADRD) to local symphony performances, hosting a social reception prior to the performance, and assessing the outcomes of participation for both caregiver and the care recipient. (2) Materials, Methods, and Analysis: Qualitative data from participant phone interviews (n = 55) as well as focus groups are analyzed using thematic analysis from a phenomenological perspective. (3) Results: Across three years of participation, caregivers reported three main program benefits: relationship building (both with other participants as well as within the broader community); restored humanity (experiencing a greater sense of personal dignity and momentary return to normalcy), and positivity (experiencing positive emotions during the program). (4) Discussion: These findings point to the value of creating caregiver programming that brings together multiple dimensions of successful interventions in order to enhance caregiver experiences and positive intervention outcomes.

How family dementia caregivers perceive benefits of a 4-week MIT mindfulness and guided imagery program: a pilot study

2019 ◽  
Author(s):  
Francis Yang ◽  
Joseph Zamaria ◽  
Stefana Morgan ◽  
Eric Lin ◽  
Andrew F. Leuchter ◽  
...  
Keyword(s):  
Psychological Symptoms ◽  
Pilot Trial ◽  
Well Being ◽  
Mental States ◽  
Care Recipient ◽  
Structured Interviews ◽  
Active Components ◽  
Post Intervention ◽  
Dementia Caregivers ◽  
Self Compassion

BackgroundFamily caregivers of patients with dementia experience high levels of interpersonal stress that often results in elevated anxiety, depression and negative impacts on social networks. Changes in behaviors and the structure of relationships with the care recipient (CR) and others in the social milieu challenge the caregivers’ ability to mentalize, or understand the links between mental states and behaviors. This study investigates the perceived benefits for family dementia caregivers of Mentalizing Imagery Therapy (MIT), which aims to improve balanced mentalizing of both self and others and reduce psychological symptoms. Methods11 family members who identified as the primary caregiver of a relative with dementia underwent a 4-week pilot trial of MIT and completed semi-structured interviews post-intervention to identify subjective benefits, putative psychological mediators and perceived active components. ResultsCaregivers reported improvements in general well-being, mood, anxiety, and sleep, and a majority stated the intervention helped with forming and maintaining healthier relationships. Some participants noted benefits extending to how they reacted to their social environment and perceived themselves more objectively from others’ perspectives. Specific elements of the intervention, including self-compassion, self-care, and the ability to reflect on emotionally arousing challenges, might have mediated these improvements. The combination of instructor, meditations, homework, group sessions, and educational sessions was well received by participants.ConclusionOur results show that family dementia caregivers described perceived salutary benefits of MIT on multiple domains of well-being. The self reports suggest MIT holds promise for reducing non-mentalizing patterns of thought, and facilitating improvements in balanced mentalization within the caregivers’ relationships. These results should be further extended in larger samples.

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