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Article ; Online: Advance Care Planning in Belgium.

Dupont, Charlèss / De Vleminck, Aline / Deliens, Luc / Gilissen, Joni

Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen

2023 Volume 180, Page(s) 121–126

Abstract: This paper aims to 1) describe current levels of Advance Care Planning (ACP) development since 2002 in Belgium, 2) report on challenges and opportunities to inspire other countries with similar contextual characteristics and 3) support further ... ...

Abstract	This paper aims to 1) describe current levels of Advance Care Planning (ACP) development since 2002 in Belgium, 2) report on challenges and opportunities to inspire other countries with similar contextual characteristics and 3) support further development of ACP practice and research in Belgium. To address these aims, we consulted local researchers, 12 domain experts and (grey) literature (regulatory documents, reports, policy documents and practice guidelines) on ACP, palliative care, and related healthcare topics. Since 2002, when the Patient's Right Law was passed in the federal Parliament, Belgium has had a specific medicolegal context for ACP. Initiatives to improve the uptake of ACP have been taken, e.g. standardised documentation, reimbursement codes for physicians provided by the government, and implementation of quality indicators in hospitals and nursing homes. Most of these initiatives are grassroots or predominantly oriented towards a single group of professions, e.g. general practitioners, disregarding the role that other professions can play. The patient groups most often targeted are those with cancer and older adults. Limited but growing attention is given to those with low health literacy or other minority groups. Main barriers to ACP in Belgium are: no unified platform to exchange outcomes of ACP discussions or advance directives between healthcare professionals and though efforts are made, ACP is still predominantly oriented towards documentation.
MeSH term(s)	Humans ; Aged ; Belgium ; Germany ; Advance Care Planning ; Nursing Homes ; General Practitioners
Language	English
Publishing date	2023-06-28
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	2412512-X
ISSN	2212-0289 ; 1865-9217
ISSN (online)	2212-0289
ISSN	1865-9217
DOI	10.1016/j.zefq.2023.05.003
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Article ; Online: Complexities and Outcomes of Advance Care Planning.

Gilissen, Joni / Van den Block, Lieve / Pivodic, Lara

JAMA internal medicine

2020 Volume 181, Issue 1, Page(s) 142–143

MeSH term(s)	Advance Care Planning ; Humans
Language	English
Publishing date	2020-10-16
Publishing country	United States
Document type	Journal Article ; Comment
ZDB-ID	2699338-7
ISSN	2168-6114 ; 2168-6106
ISSN (online)	2168-6114
ISSN	2168-6106
DOI	10.1001/jamainternmed.2020.5539
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Article ; Online: Supporting early-career dementia researchers: Identifying support needs and ways forward via a European study.

Dupont, Charlèss / Gilissen, Joni / Dassen, Fania C M / Branco, Rita Maldonado / Heins, Pascale / Heffernan, Eithne / Bartels, Sara Laureen

Alzheimer's & dementia : the journal of the Alzheimer's Association

2023 Volume 20, Issue 2, Page(s) 1321–1333

Abstract: Introduction: Early-career researchers contribute significantly to dementia research and clinical practice. However, a growing group of early-career dementia researchers (ECDRs) lack appropriate support throughout their careers. Thus, we aim to (i) ... ...

Abstract	Introduction: Early-career researchers contribute significantly to dementia research and clinical practice. However, a growing group of early-career dementia researchers (ECDRs) lack appropriate support throughout their careers. Thus, we aim to (i) explore support needs, (ii) determine recommendations, and (iii) set the agenda for organizations to better support ECDRs. Methods: An iterative, explanatory sequential mixed-methods design was applied. First ECDRs' needs were identified using an online survey informed by the Vitae Researcher Development Framework. Next, priority areas were selected and explored qualitatively with ECDRs in two workshops, utilizing the World Café methodology. Results: Sixty-five ECDRs throughout Europe completed the survey, with the majority reporting that greater support is needed in terms of funding and career opportunities, social support and well-being, and "wide-reaching" dissemination. Discussion: Based on the findings, six recommendations for support organizations, funding bodies, and universities to better support ECDRs are formulated, each intended for specific target audiences. Highlights: This article reports on focal points of career-related support needed in doctoral education and postdoctoral employment to foster a healthier academic environment, including finance, work-life balance, dissemination of research findings, and supervision, both in general and in dementia fields specifically. Funding and resources were identified as a significant challenge, and there was a call for more long-term positions and transition funding for postdoctoral researchers. Early-career dementia researchers addressed the need for support in producing outputs for non-academic audiences, including people living with dementia. The importance of disseminating research to diverse audiences has long been recognized; thus, it is critical that early-career dementia researchers be supported in this effort. Recommendations were formulated for researcher support (organizations), funding bodies, and universities. These recommendations include providing support for disseminating research to non-academic audiences, offering training in supervision skills, and promoting peer-to-peer mentoring and social activities for early-career dementia researchers.
MeSH term(s)	Humans ; Europe ; Research Personnel/education ; Dementia/therapy
Language	English
Publishing date	2023-11-20
Publishing country	United States
Document type	Journal Article
ZDB-ID	2211627-8
ISSN	1552-5279 ; 1552-5260
ISSN (online)	1552-5279
ISSN	1552-5260
DOI	10.1002/alz.13530
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Article ; Online: Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease.

Harrison, Krista L / Garrett, Sarah B / Gilissen, Joni / Terranova, Michael J / Bernstein Sideman, Alissa / Ritchie, Christine S / Geschwind, Michael D

Prion

2022 Volume 16, Issue 1, Page(s) 23–39

Abstract: We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with ... ...

Abstract	We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the University of California San Francisco Rapidly Progressive Dementia research database. We purposively recruited 12 caregivers for in-depth interviews and extracted associated patient data. We analysed interviews using the constant comparison method and chart data using descriptive statistics. Patients had a median age of 70 (range: 60-86) years and disease duration of 14.5 months (range 4-41 months). Caregivers were interviewed a median of 22 (range 11-39) months after patient death and had a median age of 59 (range 45-73) years. Three major sources of distress included (1) the unique nature of sporadic Creutzfeldt-Jakob disease; (2) clinical care issues such as difficult diagnostic process, lack of expertise in sporadic Creutzfeldt-Jakob disease, gaps in clinical systems, and difficulties with end-of-life care; and (3) caregiving issues, including escalating responsibilities, intensifying stress, declining caregiver well-being, and care needs surpassing resources. Two sources of support were (1) clinical care, including guidance from providers about what to expect and supportive relationships; and (2) caregiving supports, including connection to persons with experience managing Creutzfeldt-Jakob disease, instrumental support, and social/emotional support. The challenges and supports described by caregivers align with neuropalliative approaches and can be used to develop interventions to address needs of persons with sporadic Creutzfeldt-Jakob disease and their caregivers.
MeSH term(s)	Aged ; Child ; Child, Preschool ; Creutzfeldt-Jakob Syndrome/diagnosis ; Creutzfeldt-Jakob Syndrome/therapy ; Humans ; Middle Aged
Language	English
Publishing date	2022-03-02
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't
ZDB-ID	2267671-5
ISSN	1933-690X ; 1933-690X
ISSN (online)	1933-690X
ISSN	1933-690X
DOI	10.1080/19336896.2022.2043077
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Article: Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

Sideman, Alissa Bernstein / Gilissen, Joni / Harrison, Krista L / Garrett, Sarah B / Terranova, Michael J / Ritchie, Christine S / Geschwind, Michael D

Journal of geriatric psychiatry and neurology

2022 Volume 36, Issue 4, Page(s) 282–294

Abstract: Introduction: People with suspected Alzheimer's disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be ... ...

Abstract	Introduction: People with suspected Alzheimer's disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be even more distressing in rarer, atypical syndromes such as rapidly progressive dementias (RPDs), which can be fatal within months from onset. This study is an examination of the diagnostic journey experience from the perspective of caregivers of people who died from the prototypic RPD, sporadic Creutzfeldt-Jakob Disease (sCJD). Methods: eIn this mixed-methods study, qualitative data were drawn from interviews with former caregivers of 12 people who died from sCJD. Chart review data were drawn from research and clinical chart data about the person with sCJD. Data were analyzed by a multidisciplinary research team using qualitative and descriptive statistical analysis. Results: We identified 4 overarching themes that characterized the experience of the diagnostic journey in sCJD: clinician knowledge, clinician communication, experiences of uncertainty, and the caregiver as advocate. We also identified 4 phases along the diagnostic journey: recognition, the diagnostic workup, diagnosis, and post-diagnosis. Sub-themes within each phase include struggles to recognize what is wrong, complex processes of testing and referrals, delay and disclosure of diagnosis, and access to resources post-diagnosis. Conclusions: Findings suggest that more work is needed to improve clinician diagnostic knowledge and communication practices. Furthermore, caregivers need better support during the diagnostic journey. What we learn from studying sCJD and other RPDs is likely applicable to other more common dementias.
MeSH term(s)	Humans ; Caregivers ; Syndrome ; Creutzfeldt-Jakob Syndrome/diagnosis ; Alzheimer Disease
Language	English
Publishing date	2022-11-22
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural ; Research Support, U.S. Gov't, Non-P.H.S. ; Research Support, U.S. Gov't, P.H.S. ; Research Support, Non-U.S. Gov't
ZDB-ID	1035760-9
ISSN	0891-9887
ISSN	0891-9887
DOI	10.1177/08919887221135552
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Article ; Online: Unmet health-related needs of community-dwelling older adults during COVID-19 lockdown in a diverse urban cohort.

Perry, Laura / Scheerens, Charlotte / Greene, Meredith / Shi, Ying / Onion, Zoe / Bayudan, Evamae / Stern, Rachel J / Gilissen, Joni / Chodos, Anna H

Journal of the American Geriatrics Society

2022 Volume 71, Issue 1, Page(s) 178–187

Abstract: Background: Shelter-in-place orders during the COVID-19 pandemic created unmet health-related and access-related needs among older adults. We sought to understand the prevalence of these needs among community-dwelling older adults.: Methods: We ... ...

Abstract	Background: Shelter-in-place orders during the COVID-19 pandemic created unmet health-related and access-related needs among older adults. We sought to understand the prevalence of these needs among community-dwelling older adults. Methods: We performed a retrospective chart review of pandemic-related outreach calls to older adults between March and July 2020 at four urban, primary care clinics: a home-based practice, a safety net adult medicine clinic, an academic geriatrics practice, and a safety net clinic for adults living with HIV. Participants included those 60 or older at three sites, and those 65 or older with a chronic health condition at the fourth. We describe unmet health-related needs (the need for medication refills, medical supplies, or food) and access-related needs (ability to perform a telehealth visit, need for a call back from the primary care provider). We performed bivariate and multivariate analyses to examine the association between unmet needs and demographics, medical conditions, and healthcare utilization. Results: Sixty-two percent of people had at least one unmet need. Twenty-six percent had at least one unmet health-related need; 14.0% needed medication refills, 12.5% needed medical supplies, and 3.0% had food insecurity. Among access-related needs, 33% were not ready for video visits, and 36.4% asked for a return call from their provider. Prevalence of any unmet health-related need was the highest among Asian versus White (36.4% vs. 19.1%) and in the highest versus lowest poverty zip codes (30.8% vs. 18.2%). Those with diabetes and COPD had higher unmet health-related needs than those without, and there was no change in healthcare utilization. Conclusions: During COVID, we found that disruptions in access to services created unmet needs among older adults, particularly for those who self-identified as Asian. We must foreground the needs of this older population group in the response to future public health crises.
MeSH term(s)	Humans ; Aged ; COVID-19/epidemiology ; Independent Living ; Pandemics ; Retrospective Studies ; Communicable Disease Control ; Health Services Needs and Demand
Language	English
Publishing date	2022-10-23
Publishing country	United States
Document type	Journal Article
ZDB-ID	80363-7
ISSN	1532-5415 ; 0002-8614
ISSN (online)	1532-5415
ISSN	0002-8614
DOI	10.1111/jgs.18098
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Article ; Online: Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease

Krista L. Harrison / Sarah B. Garrett / Joni Gilissen / Michael J. Terranova / Alissa Bernstein Sideman / Christine S. Ritchie / Michael D. Geschwind

Prion, Vol 16, Iss 1, Pp 23-

2022 Volume 39

Abstract	We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the University of California San Francisco Rapidly Progressive Dementia research database. We purposively recruited 12 caregivers for in-depth interviews and extracted associated patient data. We analysed interviews using the constant comparison method and chart data using descriptive statistics. Patients had a median age of 70 (range: 60–86) years and disease duration of 14.5 months (range 4–41 months). Caregivers were interviewed a median of 22 (range 11–39) months after patient death and had a median age of 59 (range 45–73) years. Three major sources of distress included (1) the unique nature of sporadic Creutzfeldt-Jakob disease; (2) clinical care issues such as difficult diagnostic process, lack of expertise in sporadic Creutzfeldt-Jakob disease, gaps in clinical systems, and difficulties with end-of-life care; and (3) caregiving issues, including escalating responsibilities, intensifying stress, declining caregiver well-being, and care needs surpassing resources. Two sources of support were (1) clinical care, including guidance from providers about what to expect and supportive relationships; and (2) caregiving supports, including connection to persons with experience managing Creutzfeldt-Jakob disease, instrumental support, and social/emotional support. The challenges and supports described by caregivers align with neuropalliative approaches and can be used to develop interventions to address needs of persons with sporadic Creutzfeldt-Jakob disease and their caregivers.
Keywords	Sporadic Creutzfeldt-Jakob ; palliative ; qualitative ; mixed methods ; caregiver ; Neurology. Diseases of the nervous system ; RC346-429 ; Biology (General) ; QH301-705.5
Subject code	360 ; 610
Language	English
Publishing date	2022-12-01T00:00:00Z
Publisher	Taylor & Francis Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: International COVID-19 Palliative Care Guidance for Nursing Homes Leaves Key Themes Unaddressed.

Gilissen, Joni / Pivodic, Lara / Unroe, Kathleen T / Van den Block, Lieve

Journal of pain and symptom management

2020 Volume 60, Issue 2, Page(s) e56–e69

Abstract: COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we ... ...

Abstract	COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we aimed to identify, review, and compare national and international COVID-19 guidance for nursing homes concerning palliative care, issued by government bodies and professional associations. We performed a directed documentary and content analysis of newly developed or adapted COVID-19 guidance documents from across the world. Documents were collected via expert consultation and independently screened against prespecified eligibility criteria. We applied thematic analysis and narrative synthesis techniques. We identified 21 eligible documents covering both nursing homes and palliative care, from the World Health Organization (n = 3), and eight individual countries: U.S. (n = 7), The Netherlands (n = 2), Ireland (n = 1), U.K. (n = 3), Switzerland (n = 3), New Zealand (n = 1), and Belgium (n = 1). International documents focused primarily on infection prevention and control, including only a few sentences on palliative care-related topics. Palliative care themes most frequently mentioned across documents were end-of-life visits, advance care planning documentation, and clinical decision making toward the end of life (focusing on hospital transfers). There is a dearth of comprehensive international COVID-19 guidance on palliative care for nursing homes. Most have a limited focus both regarding breadth of topics and recommendations made. Key aspects of palliative care, that is, symptom management, staff education and support, referral to specialist services or hospice, and family support, need greater attention in future guidelines.
MeSH term(s)	COVID-19 ; Coronavirus Infections/prevention & control ; Coronavirus Infections/therapy ; Disease Management ; Family ; Health Personnel/education ; Humans ; Internationality ; Nursing Homes ; Palliative Care/methods ; Pandemics/prevention & control ; Pneumonia, Viral/prevention & control ; Pneumonia, Viral/therapy ; Practice Guidelines as Topic ; Referral and Consultation ; Terminal Care/methods
Keywords	covid19
Language	English
Publishing date	2020-05-11
Publishing country	United States
Document type	Journal Article ; Review
ZDB-ID	639142-4
ISSN	1873-6513 ; 0885-3924
ISSN (online)	1873-6513
ISSN	0885-3924
DOI	10.1016/j.jpainsymman.2020.04.151
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Article ; Online: Earlier initiation of palliative care in the disease trajectory of people living with dementia: a scoping review protocol.

Gilissen, Joni / Hunt, Lauren / Van den Block, Lieve / van der Steen, Jenny / Tahir, Peggy / Ritchie, Christine

BMJ open

2021 Volume 11, Issue 6, Page(s) e044502

Abstract: Introduction: While the need for palliative care for people living with dementia has widely been recognised, they continue to be a disadvantaged group when it comes to timely initiation, and controversies remain regarding appropriate timing, or what ... ...

Abstract	Introduction: While the need for palliative care for people living with dementia has widely been recognised, they continue to be a disadvantaged group when it comes to timely initiation, and controversies remain regarding appropriate timing, or what elements constitute high quality palliative care early in the disease trajectory. To date, no literature review has summarised this debate or offered insights. The aim of this scoping review is to provide a general overview of research regarding palliative care in mild or moderate dementia, to identify existing controversies, and to examine what are key components of palliative care in dementia, specifically when initiated earlier in the disease trajectory. Methods and analysis: Consistent with recent guidelines and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, we carried out a search for academic literature in PubMed, CINAHL, EMBASE, Cochrane Library, PsycINFO, Web of Science; on 5 November 2019 and an updated search on 2 February 2021. We will include studies with different study designs published in English over the last decade that focused on palliative care in early stages of dementia. We will include models targeting at least one outcome domain of palliative care (physical, psychological, social or spiritual) and advance care planning, and will exclude hospice models with limited prognosis similar to the requirements in the USA. We will report study characteristics and quality. We aim to apply narrative synthesis techniques to develop a theoretical model of how, for whom and why palliative care can be relevant in early stages of dementia, and what are facilitators and barriers. We anticipate to also describe if and how the concept of (early) palliative care in dementia changed across time and studies. Ethics and dissemination: No ethical review required. Results will identify research gaps and lay out basic principles for conceptualising palliative care in early stages of dementia.
MeSH term(s)	Cognition ; Dementia/therapy ; Hospice Care ; Humans ; Palliative Care ; Research Design ; Review Literature as Topic ; Systematic Reviews as Topic
Language	English
Publishing date	2021-06-21
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2599832-8
ISSN	2044-6055 ; 2044-6055
ISSN (online)	2044-6055
ISSN	2044-6055
DOI	10.1136/bmjopen-2020-044502
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Article ; Online: Developing eHealth tools for diverse older adults: Lessons learned from the PREPARE for Your Care Program.

Scheerens, Charlotte / Gilissen, Joni / Volow, Aiesha M / Powell, Jana L / Ferguson, Clarissa M / Farrell, David / Li, Brookelle / Berry, Corinne / Sudore, Rebecca L

Journal of the American Geriatrics Society

2021 Volume 69, Issue 10, Page(s) 2939–2949

Abstract: Background/objectives: Electronic Health (eHealth) tools offer opportunities for people to access health information online; yet, most tools are not designed to meet the unique needs of diverse older adults, leading to health disparities. Our goal was ... ...

Abstract	Background/objectives: Electronic Health (eHealth) tools offer opportunities for people to access health information online; yet, most tools are not designed to meet the unique needs of diverse older adults, leading to health disparities. Our goal was to provide guidance for the development of eHealth tools for diverse older populations for use in geriatric care models. Design: Guidance for eHealth tools was compiled from user design resources and eHealth design literature. Pragmatic examples were provided from an evidenced-based eHealth tool called PREPAREforYourCare.org (PREPARE). We used quantitative feasibility data from PREPARE research studies and qualitative analysis of PREPARE focus groups, cognitive interviews, and feedback from randomized trials to further inform our recommendations. Results: Guidance and lessons learned include: (1) define clear objectives and a conceptual framework; (2) co-create with the target population; (3) optimize the design and layout for accessibility and ease of use, such as text at the 5th grade reading level, closed captioning, etc.; (4) use simple, standardized navigation design; (5) use actionable information to enhance behavior change, such as modeling of behaviors; (6) align accompanying written materials with the eHealth tool; and (7) create tracking mechanisms for ongoing user feedback. PREPARE is used as a case example to provide pragmatic illustrations for how the guidance may be operationalized. Conclusion: eHealth tools can be tailored to the unique characteristics, preferences, and needs of diverse older populations. Following the "lessons learned" may help decrease health disparities among diverse older adults and ensure eHealth tools are readily accessible and culturally appropriate.
MeSH term(s)	Aged ; Aged, 80 and over ; Feasibility Studies ; Female ; Focus Groups ; Geriatrics/methods ; Health Services Accessibility ; Health Services for the Aged ; Humans ; Male ; Program Evaluation ; Qualitative Research ; Telemedicine ; User-Centered Design
Language	English
Publishing date	2021-06-03
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't ; Research Support, U.S. Gov't, Non-P.H.S.
ZDB-ID	80363-7
ISSN	1532-5415 ; 0002-8614
ISSN (online)	1532-5415
ISSN	0002-8614
DOI	10.1111/jgs.17284
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