scholarly journals What do health professionals need to know about young onset dementia? An international Delphi consensus study

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Leah Couzner ◽  
Sally Day ◽  
Brian Draper ◽  
Adrienne Withall ◽  
Kate E. Laver ◽  
...  
Keyword(s):  
Health Professionals ◽  
Delphi Study ◽  
Online Survey ◽  
Psychosocial Support ◽  
Neuropsychiatric Symptoms ◽  
Contributing Factors ◽  
Delphi Consensus ◽  
Young Onset ◽  
Family Approach ◽  
Young Onset Dementia

Abstract Background People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD. Methods An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance. Results The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms. Conclusions The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.

scholarly journals Predeath Grief, Resourcefulness, and Perceived Stress Among Caregivers of Partners With Young-Onset Dementia

2018 ◽  
Vol 41 (7) ◽  
pp. 973-989 ◽  
Author(s):  
Karie Ruekert Kobiske ◽  
Abir K. Bekhet ◽  
Mauricio Garnier-Villarreal ◽  
Marilyn Frenn
Keyword(s):  
Perceived Stress ◽  
Online Survey ◽  
Theoretical Framework ◽  
Future Research ◽  
Resilience Theory ◽  
Moderating Effects ◽  
Cross Sectional ◽  
Young Onset ◽  
Young Onset Dementia ◽  
The Relationship

More than 200,000 Americans are currently diagnosed with young-onset dementia (YOD). YOD is dementia diagnosed prior to the age of 65. Most persons of YOD are cared for by their partners. Using the theoretical framework of Resilience Theory, this cross-sectional, correlational study examined the moderating effects of personal and social resourcefulness on the relationship between predeath grief and perceived stress among 104 YOD caregiving partners (life partners/spouses) using an online survey platform. Results indicated a large positive correlation between predeath grief and caregiver perceived stress ( r = .65; p < .001). Together predeath grief, personal resourcefulness and social resourcefulness explained 51.5% of the variance in perceived stress. Personal resourcefulness did not moderate the relationship. Social resourcefulness did positively moderate this relationship between predeath grief and perceived stress. These findings allow for a better understanding of the caregiving experience for a partner with YOD and creates opportunities for future research studies.

The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study

2013 ◽  
Vol 26 (12) ◽  
pp. 1991-2000 ◽  
Author(s):  
Christian Bakker ◽  
Marjolein E. de Vugt ◽  
Deliane van Vliet ◽  
Frans R.J. Verhey ◽  
Yolande A. Pijnenburg ◽  
...  
Keyword(s):  
Unmet Needs ◽  
Neuropsychiatric Symptoms ◽  
The Elderly ◽  
Care Needs ◽  
Young Onset ◽  
Future Care ◽  
Camberwell Assessment Of Need ◽  
Young Onset Dementia ◽  
The Relationship ◽  
Level Of Agreement

ABSTRACTBackground:Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning.We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms.Methods:A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers’ report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models.Results:Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms.Conclusions:Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary.

scholarly journals Differences in neuropsychiatric symptoms between nursing home residents with young-onset dementia and late-onset dementia

2018 ◽  
Vol 23 (5) ◽  
pp. 581-586 ◽  
Author(s):  
Britt Appelhof ◽  
Christian Bakker ◽  
Jeannette C. L. Van Duinen-van Den IJssel ◽  
Sandra A. Zwijsen ◽  
Martin Smalbrugge ◽  
...  
Keyword(s):  
Nursing Home ◽  
Late Onset ◽  
Neuropsychiatric Symptoms ◽  
Nursing Home Residents ◽  
Young Onset ◽  
Young Onset Dementia ◽  
Late Onset Dementia

Age, Dementia, and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework

2020 ◽  
pp. 104973232097019
Author(s):  
Sheila Novek ◽  
Verena H. Menec
Keyword(s):  
Health Professionals ◽  
Family Members ◽  
Dementia Care ◽  
Organizational Level ◽  
Diagnostic Process ◽  
Structured Interviews ◽  
Young Onset ◽  
Treatment Gaps ◽  
Canadian City ◽  
Young Onset Dementia

People living with young onset dementia face significant barriers to diagnosis, resulting in delays, misdiagnoses, and treatment gaps. We examined the process of accessing and delivering a diagnosis of young onset dementia using the candidacy framework as a conceptual lens. Semi-structured interviews were conducted with six people living with dementia, 14 family members, and 16 providers in a western Canadian city. Participants’ accounts revealed the diagnosis of young onset dementia as a negotiated process involving patients, family members, and health professionals. Assumptions about age and dementia affected how participants interpreted their symptoms, how they presented to services, and how they, in turn, were perceived by providers. At the organizational level, age-restrictions, fragmentation, and unclear referral pathways further complicated the diagnostic process. Our findings lend support to the growing call for specialist young onset dementia care and point toward several recommendations to develop more age-inclusive diagnostic services.

scholarly journals Prevalence and Correlates of Neuropsychiatric Symptoms in Nursing Home Patients With Young-Onset Dementia: The BEYOnD Study

2016 ◽  
Vol 17 (6) ◽  
pp. 495-500 ◽  
Author(s):  
Ans J.M.J. Mulders ◽  
Ilma W.F. Fick ◽  
Hans Bor ◽  
Frans R.J. Verhey ◽  
Sytse U. Zuidema ◽  
...  
Keyword(s):  
Nursing Home ◽  
Neuropsychiatric Symptoms ◽  
Young Onset ◽  
Nursing Home Patients ◽  
Young Onset Dementia

scholarly journals Expert opinion on the UK standard of care for haemophilia patients with inhibitors: a modified Delphi consensus study

2021 ◽  
Vol 12 ◽  
pp. 204062072110070
Author(s):  
Kate Khair ◽  
Elizabeth Chalmers ◽  
Thuvia Flannery ◽  
Annabel Griffiths ◽  
Felicity Rowley ◽  
...  
Keyword(s):  
Delphi Study ◽  
Online Survey ◽  
Treatment Options ◽  
Tolerance Induction ◽  
Standard Of Care ◽  
Steering Committee ◽  
Delphi Consensus ◽  
Modified Delphi ◽  
Bypassing Agents ◽  
The Uk

Background and Aims: Despite advances in haemophilia care, inhibitor development remains a significant complication. Although viable treatment options exist, there is some divergence of opinion in the appropriate standard approach to care and goals of treatment. The aim of this study was to assess consensus on United Kingdom (UK) standard of care for child and adult haemophilia patients with inhibitors. Methods: A modified Delphi study was conducted using a two-round online survey. A haemophilia expert steering committee and published literature informed the Round 1 questionnaire. Invited participants included haematologists, haemophilia nurses and physiotherapists who had treated at least one haemophilia patient with inhibitors in the past 5 years. Consensus for 6-point Likert scale questions was pre-defined as ⩾70% participants selecting 1–2 (disagreement) or 5–6 (agreement). Results: In all, 46.7% and 35.9% questions achieved consensus in Rounds 1 ( n = 41) and 2 ( n = 34), respectively. Consensus was reached on the importance of improving quality of life (QoL) and reaching clinical goals such as bleed prevention, eradication of inhibitors and pain management. There was agreement on criteria constituting adequate/inadequate responses to immune tolerance induction (ITI) and the appropriate factor VIII dose to address suboptimal ITI response. Opinions varied on treatment aims for adults and children/adolescents, when to offer prophylaxis with bypassing agents and expectations of prophylaxis. Consensus was also lacking on appropriate treatment for mild/moderate patients with inhibitors. Conclusion: UK healthcare professionals appear to be aligned on the clinical goals and role of ITI when managing haemophilia patients with inhibitors, although novel treatment developments may require reassessment of these goals. Lack of consensus on prophylaxis with bypassing agents and management of mild/moderate cases identifies a need for further research to establish more comprehensive, evidence-based treatment guidance, particularly for those patients who are unable/prefer not to receive non-factor therapies.

scholarly journals The Determinants of Quality of Life of Nursing Home Residents with Young-Onset Dementia and the Differences between Dementia Subtypes

2017 ◽  
Vol 43 (5-6) ◽  
pp. 320-329 ◽  
Author(s):  
Britt Appelhof ◽  
Christian Bakker ◽  
Jeannette C.L. Van Duinen-van den Ijssel ◽  
Sandra A. Zwijsen ◽  
Martin Smalbrugge ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Frontotemporal Dementia ◽  
Neuropsychiatric Symptoms ◽  
Nursing Home Residents ◽  
Young Onset ◽  
Alzheimer Dementia ◽  
Young Onset Dementia ◽  
Dementia Subtype

Aims: The aims of this study are to (1) explore the determinants of quality of life (QoL) in nursing home residents with young-onset dementia (YOD), (2) investigate whether there are differences between dementia subtypes (Alzheimer dementia, vascular/mixed dementia, frontotemporal dementia, other) regarding these determinants, and (3) compare QoL profiles of YOD nursing home residents across dementia subtypes. Methods: This cross-sectional study included 207 nursing home residents. Multilevel modeling was used to determine the relationships between QoL and neuropsychiatric symptoms (NPS), dementia severity, psychotropic drug use (PDU), dementia subtype, age, and gender. Additional multilevel models were used to compare aspects of QoL between dementia subtypes. Results: Residents' QoL was negatively associated with advanced dementia, PDU, and NPS. In general, the relationships between the determinants and QoL were similar across the dementia subtypes. Aspects of QoL differed by dementia subtype. Residents with frontotemporal dementia showed less negative emotions, accepted more help and experienced better quality of relationships with professional caregivers, had a more positive self-image, felt more comfortable in the nursing home environment, and experienced lower quality of social relationships. Conclusions: Considering the high rates of NPS and PDU in YOD residents and their negative associations with QoL, we recommend emphasizing services to manage and reduce NPS and PDU in nursing home residents with YOD. Furthermore, our findings suggest accounting for differences in aspects of QoL by dementia subtype to address specific needs and thereby improve QoL.

Gaps in caregiving for young-onset colorectal cancer patients.

2020 ◽  
Vol 38 (4_suppl) ◽  
pp. 82-82
Author(s):  
Kim Lynn Newcomer ◽  
Ronit Yarden ◽  
Danielle Peterson ◽  
Keyword(s):  
Colorectal Cancer ◽  
Online Survey ◽  
Psychosocial Support ◽  
Self Report ◽  
Medical Community ◽  
Public Health Issue ◽  
Patient Journey ◽  
Young Onset ◽  
Medical Needs ◽  
Growing Population

82 Background: The rise of young-onset colorectal cancer (YO-CRC) is an alarming public health issue. Interestingly, the proportion of new cases diagnosed in young people (20-49) had increased from 6% in 1990 to 11% in 2013 and coincides with the declining CRC cases in older people. YO-CRC patients face unique clinical challenges as many are diagnosed at advanced stages of the disease and subjected to aggressive treatments. In addition, diagnosis often disrupts early family and career developmental tasks and goals, suggesting the need for additional psychosocial support. Caregivers are an important part of the patient journey. Caregivers serve as liaisons with the medical community and the patient’s social network. The goal of this study is to cast light and explore the experience of caregivers who were caring for YO-CRC patients. Methods: The online survey was completed by 208 caregivers, diverse in age, gender, and race/ethnicity. Participants indicated their relationship as either: spouse/partner, parents, siblings, children, and non-family members. Results: Caregivers self-report they do not understand the important aspects of patients' medical needs despite 79% of caregivers are college graduates and 43% had an advanced degree. Most of the respondents (76%) lack understanding about treatment options and 56% did not feel confident they understood healthcare decisions. Overall, caregivers needed more information and guidance for managing the side-effects of treatment, A majority of caregivers (93%) reported fatigue due to lack of sleep and 63% reporting they missed eight hours or more of work each month. Participants (73%) reported they needed help for panic and anxiety and employed different coping mechanisms to deal with the toll of caregiving. Conclusions: Our survey indicates we must recognize caregivers as the patient's healthcare partners and engage them in the entire plan of care. A growing population of YO-CRC patients means a growing population of caregivers who are navigating work, parenthood, impacts on sexual health, and role changes right along with that patient. Such understanding could help in developing appropriate interventions for caregivers aimed at reducing their burden and stress in caring for patients with YO-CRC.

scholarly journals The course of neuropsychiatric symptoms in institutionalized patients with young onset dementia

2018 ◽  
Vol 24 (3) ◽  
pp. 439-444 ◽  
Author(s):  
Rosa Bauhuis ◽  
Ans J. M. J. Mulders ◽  
Raymond T. C. M. Koopmans
Keyword(s):  
Neuropsychiatric Symptoms ◽  
Young Onset ◽  
Young Onset Dementia ◽  
Institutionalized Patients

scholarly journals 327 - The Course and Predictors of Quality of Life in Nursing Home Residents with Young-onset Dementia

2020 ◽  
Vol 32 (S1) ◽  
pp. 85-86
Author(s):  
Lihui Pu ◽  
Christian Bakker ◽  
Britt Appelhof ◽  
Jeannette C.L. Van Duinen-van den Ijssel ◽  
Sandra A. Zwijsen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Drug Use ◽  
Nursing Homes ◽  
Positive Affect ◽  
Neuropsychiatric Symptoms ◽  
Significant Decline ◽  
Advanced Dementia ◽  
Young Onset ◽  
Young Onset Dementia

Background:People with young-onset dementia (YOD) living in nursing homes may experience poor quality of life (QoL) due to advanced dementia, high prevalence of neuropsychiatric symptoms and psychotropic drug use. However, the course of QoL in institutionalized people with YOD and factors that predict this course are unclear. This knowledge could help health professionals identify appropriate interventions to improve QoL in YOD.Objective:To explore the course of QoL in institutionalized people with YOD and resident-related predictors of that course.Methods:Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. A total of 278 people with YOD were recruited from 13 YOD special care units in the Netherlands. QoL was measured by the proxy assessment of Quality of Life in Dementia (QUALIDEM) questionnaire at four assessments over 18 months. Independent variables included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms and psychotropic drug use at baseline. Multilevel modeling adjusted for correlation within nursing homes and residents was used to determine the course and predictors of QoL.Results:The total QUALIDEM score (range: 0–111) decreased over 18 months with a statistically significant decline of 0.73 points per six months. A significant increase of QoL over time was seen in the subscales “Care relationship”, “Positive self-image”, and “Feeling at home”. However, a significant decline was observed in the subscales “Positive affect”, “Social relations”, and “Something to do”. Residents’ course of QoL was positively associated with the baseline scores of the QoL, age and longer duration of stay; however, being male, having advanced dementia, Alzheimer’s disease and high rates of neuropsychiatric symptoms at baseline were negatively associated with the course of QoLConclusion:Longitudinal changes in QoL in residents with YOD were small over 18 months and QUALIDEM subscales showed multidirectional changes. The largest QoL decline in the subscale “Positive affect” suggests that interventions should be targeted to improve positive emotions, in particular for male residents with neuropsychiatric symptoms and advanced dementia.

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