Identifying Primary Care Models of Dementia Care that Improve Quality of Life for People Living with Dementia and their Care Partners: An Environmental Scan

2021 ◽  
pp. 1-15
Author(s):  
Mary Helmer-Smith ◽  
Ariana Mihan ◽  
Claire Sethuram ◽  
Isabella Moroz ◽  
Lois Crowe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Dementia Care ◽  
Cost Of Care ◽  
Stepped Care ◽  
Improve Quality ◽  
Environmental Scan ◽  
Care Partners ◽  
Care Models

Abstract Dementia is a growing concern in Canada, affecting peoples’ health and raising the cost of care. Between June and October 2019, we conducted an environmental scan to identify primary care models, strategies, and resources for dementia care from 11 pre-selected countries and assess their impact on quality-of-life measures. Search strategies included a rapid scoping review, grey literature search, and discussions with stakeholders. Eighteen primary care-based models of dementia care were identified. Common factors include team-based care, centralized care/case coordination, individual treatment plans, a stepped-care approach, and support for care partners. Five provinces had released a dementia strategy. Evidence of positive outcomes supported primary care-based models for dementia care, although only one model demonstrated evidence of impact on quality of life. Although these findings are encouraging, further research is needed to identify primary care-based models of dementia care that demonstrably improve quality of life for people living with dementia and their care partners.

scholarly journals PROBLEM-SOLVING TRAINING IN VA HOME BASED PRIMARY CARE TO REDUCE STRESS AND IMPROVE QUALITY OF LIFE

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 38-38
Author(s):  
S A Beaudreau ◽  
J Wetherell ◽  
J Funderburk ◽  
A Aspnes ◽  
Ann Aspnes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Problem Solving ◽  
Improve Quality ◽  
Home Based Primary Care ◽  
Home Based

Opening Minds through Art: A preliminary study evaluating the effects of a creative-expression program on persons living with dementia and their primary care partners

Dementia ◽  
2021 ◽  
pp. 147130122199729
Author(s):  
Kate Levenberg ◽  
Daniel R George ◽  
Elizabeth Lokon
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Emotional Support ◽  
Perceived Quality ◽  
Art Making ◽  
Perceived Quality Of Life ◽  
Care Partners ◽  
Preliminary Study ◽  
Anxiety Depression

For people living with dementia and their care partners, a decline in the ability to effectively communicate can cause significant distress. However, in recent decades, the arts have emerged as an effective care modality in fostering communication and expression for those with declining verbal skills and memory loss. Opening Minds through Art (OMA) is a national initiative that empowers people living with dementia by facilitating creative expression and social engagement through art-making in partnership with trained college student volunteers. Research has demonstrated that participation in the program benefits quality of life for those living with dementia and also improves student attitudes toward dementia. To date, however, no research has involved primary care partners. We implemented an OMA program at three residential care homes in State College, Pennsylvania, with residents cocreating artwork alongside primary care partners (i.e., a family member or primary medical personnel) over the course of four art-making sessions. We evaluated the effects of participation on quality of life and care partner burnout through pre–post use of “emotional thermometers” (measuring levels of distress, anxiety, depression, anger, and perceived quality of life), the National Institute of Health NIH emotional support scale, and the NIH caregiver assessment (care partner burnout). For people living with dementia, participation significantly increased perceived quality of life while decreasing distress, anxiety, depression, and anger ( p < .01; n = 12) after each class; however, the intervention did not significantly impact perceived emotional support. For care partners, participation significantly lowered post-intervention measures of burnout and self-rated stress ( p < .01; n = 9). This preliminary study suggests that a structured art-based activity appears to positively impact acute mood for patients and, importantly, decrease care partner burnout. Future research can bring more robust methods to bear in determining how to use OMA and other arts interventions to optimize social support for people living with dementia and their care partners.

scholarly journals QOLP-06. PHENOMENOLOGICAL EXPLORATION OF THE LIVED EXPERIENCE OF QUALITY OF LIFE FOR PATIENTS WITH GLIOBLASTOMA AND THEIR PRIMARY CARE PARTNERS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii175-ii176
Author(s):  
Meghan Tierney ◽  
Cynthia Peden-McAlpine
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Lived Experience ◽  
Family Care ◽  
Phenomenological Approach ◽  
Future Research ◽  
Role Changes ◽  
Care Partners ◽  
The Future

Abstract INTRODUCTION Quality of life (QOL) should be included among the important outcomes of brain tumor treatment. QOL is often reduced to a measure of treatment tolerability, resulting in a lack of understanding of how patients experience this phenomenon. There is also limited knowledge surrounding the meaning of QOL for family care partners. The research (in progress) aims to explore the meaning of lived experience of QOL during treatment for glioblastoma (GBM) for both patients and their primary care partners. It will also examine similarities and differences in QOL perceptions within patient-care partner dyads. METHODS Using a phenomenological approach, this study is recruiting patients receiving treatment for GBM and their care partners. Participants complete a timeline depicting significant events impacting QOL from the time of the patient’s diagnosis to the present. They then complete an individual, unstructured interview describing their experience of QOL. Interviews are recorded and transcribed. The research team reviews and completes a thematic analysis on transcripts. RESULTS Numerous themes are emerging from the data. One theme among patients is: Feeling Uncertain About the Future. Patients discussed feeling uncertain about their prognosis during their course of treatment. They talked about the need to adjust to multiple changes in their lives over time. This uncertainty extended to concern for their QOL in the future. One theme among care partners is: Challenges in Relationship with Spouse. Care partners reported relationship conflict stemming from both personality changes in their spouse and role changes resulting in increased responsibilities for the care partner. CONCLUSION This study is providing insight into the meaning and experience of QOL for patients undergoing treatment for GBM, along with meaning and experience of QOL for their care partners. The findings will have implications for clinical practice and generate insights for future research.

scholarly journals Dementia Care and the Role of Guideline Adherence in Primary Care: Cross-Sectional Findings From the DemTab Study

2021 ◽  
Author(s):  
Sonia Lech ◽  
Julie Lorraine O'Sullivan ◽  
Johanna Drewelies ◽  
Wolfram Herrmann ◽  
Robert Spang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Dementia Care ◽  
Perceived Usefulness ◽  
Trial Registration ◽  
Cross Sectional ◽  
People With Dementia ◽  
Number Of Patients

Abstract Background: General practitioners (GPs) play a key role in the care of people with dementia (PwD). However, the role of the German Dementia Guideline in primary care remains unclear. The main objective of the present study was to examine the role of guideline-based dementia care in general practices.Methods: A cross-sectional analysis of data obtained from the DemTab study was conducted. Descriptive analyses of sociodemographic and clinical characteristics for GPs (N = 28) and PwD (N = 91) were conducted. Adherence to the German Dementia Guideline of GPs was measured at the level of PwD. Linear Mixed Models were used to analyze the associations between adherence to the German Dementia Guideline and GP factors at individual (age, years of experience as a GP, frequency of utilization of guideline, perceived usefulness of guideline) and structural (type of practice, total number of patients seen by a participating GP, and total number of PwD seen by a participating GP) levels as well as between adherence to the German Dementia Guideline and PwD’s quality of life. Results: Self-reported overall adherence of GPs was on average 71% (SD = 19.4, range: 25 – 100). Adherence to specific recommendations varied widely (from 19.2% to 95.3%) and the majority of GPs (79.1%) reported the guideline as only partially or somewhat helpful. Further, we found lower adherence to be significantly associated with higher numbers of patients (γ10 = -5.58, CI = -10.97, -0.19, p = .04). No association between adherence to the guideline and PwD’s quality of life was found (γ10 = -.86, CI = -4.18, 2.47, p = .61). Conclusion: The present study examined the role of adherence to the German Dementia Guideline recommendations in primary care. Overall, GPs reported high levels of adherence. However, major differences across guideline recommendations were found. Findings highlight the importance of guidelines for the provision of care. Dementia guidelines for GPs need to be better tailored and addressed. Further, structural changes such as more time for PwD may contribute to a sustainable change of dementia care in primary care.Trial registration: The DemTab trial was prospectively registered with the ISRCTN registry (Trial registration number: ISRCTN15854413). Registered 01 April 2019, https://doi.org/10.1186/ISRCTN15854413

scholarly journals Innovative Population and Intervention Research for LGBTQ+ Older Adults With Dementia in a COVID World

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 112-112
Author(s):  
Charles Emlet ◽  
Karen Fredriksen Goldsen
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Controlled Trial ◽  
The United States ◽  
Improve Quality ◽  
Innovative Strategies ◽  
Care Partners ◽  
Increased Risk ◽  
Health Aging

Abstract This past year, the lives of vulnerable older adults, including those within the older LGBTQ+ community have been disrupted dramatically, as has the research agendas designed to improve their lives. Older people, including LGBTQ+ older adults with dementia, have been placed at increased risk for social isolation and mental health issues during COVID, making viable interventions even more crucial. Additionally, how research is conducted within these communities needed to be adjusted in order to preserve viability. This symposium draws upon data from the National Health Aging and Sexuality/Gender study, the first longitudinal study of LGBTQ+ older adults in the United States, as well as data from Aging with Pride: IDEA (Innovations in Dementia Empowerment and Action), the first randomized controlled trial (RCT) designed to improve quality of life of LGBTQ+ adults living with dementia and their care partners. (1) Kim and Fredriksen Goldsen examine modifiable behavioral and social factors that can improve quality of life among LGBTQ+ older adults with cognitive impairment. (2) Fredriksen Goldsen, Teri, Emlet and colleagues present initial efficacy findings from the IDEA study and how the intervention needed to be altered to be viable in a COVID world. (3) The importance of Motivational Interviewing (MI) as part of a LGBTQ+ sensitive intervention designed for LGBTQ+ older adults with dementia and their care partners is discussed by Petros, Fredriksen Goldsen and Teri. As COVID continues to impact vulnerable populations as well as research and service delivery, identifying new and innovative strategies will become increasingly important.

scholarly journals Dementia care and the role of guideline adherence in primary care: cross-sectional findings from the DemTab study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sonia Lech ◽  
Julie L. O’Sullivan ◽  
Johanna Drewelies ◽  
Wolfram Herrmann ◽  
Robert P. Spang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Dementia Care ◽  
Perceived Usefulness ◽  
Trial Registration ◽  
Cross Sectional ◽  
People With Dementia ◽  
Number Of Patients

Abstract Background General practitioners (GPs) play a key role in the care of people with dementia (PwD). However, the role of the German Dementia Guideline in primary care remains unclear. The main objective of the present study was to examine the role of guideline-based dementia care in general practices. Methods A cross-sectional analysis of data obtained from the DemTab study was conducted. Descriptive analyses of sociodemographic and clinical characteristics for GPs (N = 28) and PwD (N = 91) were conducted. Adherence to the German Dementia Guideline of GPs was measured at the level of PwD. Linear Mixed Models were used to analyze the associations between adherence to the German Dementia Guideline and GP factors at individual (age, years of experience as a GP, frequency of utilization of guideline, perceived usefulness of guideline) and structural (type of practice, total number of patients seen by a participating GP, and total number of PwD seen by a participating GP) levels as well as between adherence to the German Dementia Guideline and PwD’s quality of life. Results Self-reported overall adherence of GPs was on average 71% (SD = 19.4, range: 25–100). Adherence to specific recommendations varied widely (from 19.2 to 95.3%) and the majority of GPs (79.1%) reported the guideline as only partially or somewhat helpful. Further, we found lower adherence to be significantly associated with higher numbers of patients (γ10 = − 5.58, CI = − 10.97, − 0.19, p = .04). No association between adherence to the guideline and PwD’s quality of life was found (γ10 = −.86, CI = − 4.18, 2.47, p = .61). Conclusion The present study examined the role of adherence to the German Dementia Guideline recommendations in primary care. Overall, GPs reported high levels of adherence. However, major differences across guideline recommendations were found. Findings highlight the importance of guidelines for the provision of care. Dementia guidelines for GPs need to be better tailored and addressed. Further, structural changes such as more time for PwD may contribute to a sustainable change of dementia care in primary care. Trial registration The DemTab trial was prospectively registered with the ISRCTN registry (Trial registration number: ISRCTN15854413). Registered 01 April 2019.

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