“We moved her too soon”: Navigating guilt among adult child and spousal caregivers of persons living with dementia following a move into residential long-term care.

2021 ◽  
Author(s):  
Tamara L. Statz ◽  
Colleen M. Peterson ◽  
Robyn W. Birkeland ◽  
Hayley R. McCarron ◽  
Jessica M. Finlay ◽  
...  
Keyword(s):  
Long Term Care ◽  
Adult Child ◽  
Spousal Caregivers ◽  
Term Care ◽  
Residential Long Term Care

scholarly journals IDENTIFYING PREDICTORS OF GUILT FOLLOWING PLACEMENT OF FAMILY MEMBER WITH DEMENTIA INTO RESIDENTIAL LONG-TERM CARE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S486-S487
Author(s):  
Tamara L Statz ◽  
Colleen M Peterson ◽  
Robyn Birkeland ◽  
Aneri Shah ◽  
Kobe Perez ◽  
...  
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Long Term Care ◽  
Controlled Trial ◽  
Adult Child ◽  
Spousal Caregivers ◽  
Term Care ◽  
The Impact ◽  
Residential Long Term Care

Abstract Family caregivers of persons with dementia experience guilt for various reasons when placing their family member into residential long-term care (RLTC). Research has shown a relationship between guilt and overall caregiver burden; however, literature on predictors of guilt related to caregiving following RLTC placement is limited. The Residential Care Transition Module (RCTM) provides counseling and psychoeducation to family caregivers who have recently moved their family member with Alzheimer’s disease or a related dementias into RLTC. This semi-structured intervention provides counseling on various topics including guilt, grief, and family dynamics. Using treatment group data (N=87) from the parent RCTM randomized controlled trial, we identified the impact of caregiver status (i.e., adult child vs spousal caregivers), sense of caregiver competence, and relationship closeness on baseline measures of guilt status and magnitude. Preliminary analyses showed that adult child status was associated with greater prevalence of guilt (37.5%) compared to spousal caregivers (26.7%). In addition, qualitative case notes were coded to identify common themes of experiences of guilt to inform practice. Examples include: Guilt related to no longer being able to care for the family member at home; not meeting self-dictated expectations (e.g., not visiting or staying long enough); and feeling guilted into being a caregiver in the first place. The current analyses aim to help practitioners better predict risk for placement-related guilt and highlight specific issues practitioners should consider to help mitigate such feelings. Specific opportunities for intervention are discussed.

scholarly journals Evidence for Publicly Reported Quality Indicators in Residential Long-Term Care: A Systematic Review

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 181-181
Author(s):  
Franziska Zúñiga ◽  
Magdalena Osinska ◽  
Franziska Zuniga
Keyword(s):  
New Zealand ◽  
Quality Indicators ◽  
Long Term Care ◽  
Grey Literature ◽  
Public Reporting ◽  
Assessment Instrument ◽  
Term Care ◽  
Data Set ◽  
Residential Long Term Care

Abstract Quality indicators (QIs) are used internationally to measure, compare and improve quality in residential long-term care. Public reporting of such indicators allows transparency and motivates local quality improvement initiatives. However, little is known about the quality of QIs. In a systematic literature review, we assessed which countries publicly report health-related QIs, whether stakeholders were involved in their development and the evidence concerning their validity and reliability. Most information was found in grey literature, with nine countries (USA, Canada, Australia, New Zealand and five countries in Europe) publicly reporting a total of 66 QIs in areas like mobility, falls, pressure ulcers, continence, pain, weight loss, and physical restraint. While USA, Canada and New Zealand work with QIs from the Resident Assessment Instrument – Minimal Data Set (RAI-MDS), the other countries developed their own QIs. All countries involved stakeholders in some phase of the QI development. However, we only found reports from Canada and Australia on both, the criteria judged (e.g. relevance, influenceability), and the results of structured stakeholder surveys. Interrater reliability was measured for some RAI QIs and for those used in Germany, showing overall good Kappa values (>0.6) except for QIs concerning mobility, falls and urinary tract infection. Validity measures were only found for RAI QIs and were mostly moderate. Although a number of QIs are publicly reported and used for comparison and policy decisions, available evidence is still limited. We need broader and accessible evidence for a responsible use of QIs in public reporting.

Challenges in Research and Practice in Residential Long-Term Care

2016 ◽  
Vol 49 (1) ◽  
pp. 3-5 ◽  
Author(s):  
Mieke Deschodt ◽  
Franziska Zúñiga ◽  
Nathalie I.H. Wellens
Keyword(s):  
Long Term Care ◽  
Term Care ◽  
Research And Practice ◽  
Residential Long Term Care

scholarly journals Linguistic validation of the Alberta Context Tool and two measures of research use, for German residential long term care

2014 ◽  
Vol 7 (1) ◽  
Author(s):  
Matthias Hoben ◽  
Marion Bär ◽  
Cornelia Mahler ◽  
Sarah Berger ◽  
Janet E Squires ◽  
...  
Keyword(s):  
Long Term Care ◽  
Research Use ◽  
Term Care ◽  
Linguistic Validation ◽  
Alberta Context Tool ◽  
Two Measures ◽  
Residential Long Term Care

Long-term care placement: The transitional support needs and preferences of spousal dementia caregivers

Dementia ◽  
2021 ◽  
pp. 147130122110564
Author(s):  
Deborah Brooks ◽  
Elizabeth Beattie ◽  
Elaine Fielding ◽  
Katy Wyles ◽  
Helen Edwards
Keyword(s):  
Long Term Care ◽  
Intervention Development ◽  
Care Facility ◽  
Spousal Caregivers ◽  
Support Needs ◽  
Structured Interviews ◽  
Term Care ◽  
Long Term Care Facility ◽  
Facility Staff

Background and objectives Many spousal caregivers experience stress, depression, loneliness, guilt and grief when placing a partner with dementia into long-term care. However, there is little research about their transitional support experiences, needs and preferences. This study aimed to gain a deeper understanding of these issues from spousal caregiver and long-term care facility staff perspectives, to inform subsequent support and intervention development. Research design and methods Semi-structured interviews and small group discussions were held separately with spousal caregivers ( n = 9) and care facility staff ( n = 11). Criterion and variation sampling aimed to ensure a range of experiences and perspectives. The ‘Framework’ approach was utilised for data analysis. Interpretation was with respect to underpinning models of stress-grief process in dementia caregiving. Findings A range of informational, psychoeducational and psychosocial supports were identified to help spousal caregivers cope better with the stressors and losses experienced throughout the transition from home to long-term care. Improved education about disease progression, information relating to long-term care provision, peer support and dementia-specific grief counselling were deemed important. Opportunities for better support within care facilities were also identified. Support should be tailored to individual needs and preferences. Discussion and implications The findings suggest a supportive care framework be developed, encompassing the trajectory from assessment for and admission into long-term care to end-of-life and post-bereavement support. Spousal caregivers should have their support needs assessed by trained health or social care professionals and be offered a range of support options as appropriate.

scholarly journals Dancing with dementia: Exploring the embodied dimensions of creativity and social engagement

2020 ◽  
Author(s):  
Pia Kontos ◽  
Alisa Grigorovich ◽  
An Kosurko ◽  
Rachel J Bar ◽  
Rachel V Herron ◽  
...  
Keyword(s):  
Social Engagement ◽  
Social Inclusion ◽  
Long Term Care ◽  
Participant Observation ◽  
Term Care ◽  
Embodied Self ◽  
And Function ◽  
Design And Methods ◽  
Residential Long Term Care

Abstract Background and Objectives Dance is increasingly being implemented in residential long-term care to improve health and function. However, little research has explored the potential of dance programs to support social inclusion by supporting embodied self-expression, creativity, and social engagement of persons living with dementia and their families. Research Design and Methods This was a qualitative sequential multiphase study of Sharing Dance Seniors, a dance program that includes a suite of remotely streamed dance sessions that are delivered weekly to participants in long-term care and community settings. Our analysis focused on the participation of 67 persons living with dementia and 15 family carers in residential long-term care homes in Manitoba, Canada. Data included participant observation, video-recordings, focus groups, and interviews; all data was analyzed thematically. Results We identified two themes: playfulness and sociability. Playfulness refers to the ways that the participants let go of what is ‘real’ and became immersed in the narrative of a particular dance, often adding their own style. Sociability captures the ways in which the narrative approach of the Sharing Dance Seniors program encourages connectivity/intersubjectivity between participants and their community; participants co-constructed and collaboratively animated the narrative of the dances. Discussion and Implications Our findings highlight the playful and imaginative nature of how persons living with dementia engage with dance and demonstrate how this has the potential to challenge stigma associated with dementia and support social inclusion. This underscores the urgent need to make dance programs such as Sharing Dance Seniors more widely accessible to persons living with dementia everywhere.

scholarly journals Assessing Quality for People Living With Dementia in Residential Long-Term Care: Trends and Challenges

2019 ◽  
Vol 5 ◽  
pp. 233372141986119
Author(s):  
Eleanor S. McConnell ◽  
Julienne Meyer
Keyword(s):  
Performance Indicators ◽  
Long Term Care ◽  
Well Being ◽  
Subjective Assessment ◽  
Term Care ◽  
Centered Care ◽  
Care Health ◽  
Residential Long Term Care

The global prevalence of dementia is growing rapidly, driving an increased use of residential long-term care (LTC) services. Performance indicators for residential LTC should support targeting of limited resources to promote person-centered care, health, and well-being for both patients and caregivers (formal and informal), yet many performance indicators remain focused on structure, process, or outcome measures that are only assumed to support personally relevant outcomes for those with dementia, without direct evidence of meaningfulness for these individuals. In this article, two complementary approaches to assessing quality in residential LTC serve as a lens for examining a series of tensions related to assessment in this setting. These include measurement-focused approaches using generic psychometrically valid instruments, often used to monitor quality of services, and meaning-focused approaches using individual subjective assessment of personally relevant outcomes, often used to monitor care planning. Examples from the European and U.S. literature suggest an opportunity to strengthen an emphasis on personally meaning-focused outcomes in quality assessment.

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