The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review

2016 ◽  
Vol 31 (12) ◽  
pp. 1261-1276 ◽  
Author(s):  
Joany K. Millenaar ◽  
Christian Bakker ◽  
Raymond T. C. M. Koopmans ◽  
Frans R. J. Verhey ◽  
Alexander Kurz ◽  
...  
Keyword(s):  
Systematic Review ◽  
Care Needs ◽  
Young Onset ◽  
Use Of Services ◽  
Young Onset Dementia

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 Quality of life in young onset dementia: an updated systematic review

2016 ◽  
Vol 38 (1) ◽  
pp. 6-13 ◽  
Author(s):  
Maria Alice Tourinho Baptista ◽  
Raquel Luiza Santos ◽  
Nathália Kimura ◽  
Isabel Barbeito Lacerda ◽  
Aud Johannenssen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Unmet Needs ◽  
Well Being ◽  
Future Perspective ◽  
Young Onset ◽  
Age Related ◽  
Thomson Reuters ◽  
Young Onset Dementia

Introduction Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers. Method This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL. Results People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective. Conclusion Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.

scholarly journals The incidence of young onset dementia: A systematic review and meta‐analysis

2021 ◽  
Vol 17 (S10) ◽  
Author(s):  
Stevie Hendriks ◽  
Kirsten Peetoom ◽  
Christian Bakker ◽  
Raymond Koopmans ◽  
Wiesje M van der Flier ◽  
...  
Keyword(s):  
Systematic Review ◽  
Meta Analysis ◽  
Young Onset ◽  
Young Onset Dementia

scholarly journals Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review

2017 ◽  
Vol 22 (8) ◽  
pp. 933-941 ◽  
Author(s):  
Andrea Mayrhofer ◽  
Elspeth Mathie ◽  
Jane McKeown ◽  
Frances Bunn ◽  
Claire Goodman
Keyword(s):  
Systematic Review ◽  
Young Onset ◽  
Age Appropriate ◽  
Young Onset Dementia

scholarly journals The prevalence of young onset dementia: A systematic review and meta‐analysis

2020 ◽  
Vol 16 (S10) ◽  
Author(s):  
Stevie Hendriks ◽  
Kirsten Peetoom ◽  
Frans RJ Verhey ◽  
Marjolein de Vugt ◽  
Sebastian Koehler ◽  
...  
Keyword(s):  
Systematic Review ◽  
Meta Analysis ◽  
Young Onset ◽  
Young Onset Dementia

scholarly journals Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study: an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia

2017 ◽  
Vol 30 (3) ◽  
pp. 437-446 ◽  
Author(s):  
J. C. L. van Duinen-van den IJssel ◽  
B. Appelhof ◽  
S. A. Zwijsen ◽  
M. Smalbrugge ◽  
F. R. J. Verhey ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psychotropic Drug ◽  
Unmet Needs ◽  
Neuropsychiatric Symptoms ◽  
Care Program ◽  
Community Dwelling ◽  
Care Needs ◽  
Young Onset ◽  
Young Onset Dementia

ABSTRACTBackground:Both neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) are common in institutionalized People with Young Onset Dementia (PwYOD) and can produce negative outcomes such as reduced quality of life and high workload. In community-dwelling PwYOD, NPS are found to be associated with unmet care needs. This emphasizes the importance of a care program for the management of NPS in institutionalized PwYOD that also addresses unmet care needs and PDU. The objectives of the Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study are to develop a care program for the management of NPS in institutionalized PwYOD and to evaluate its effectiveness.Methods:The care program consists of an educational program combined with an intervention to manage NPS with the following five steps: the evaluation of psychotropic drug prescription, detection, analysis (including the detection of unmet needs), treatment and the evaluation of NPS. A stepped wedge design will be used to evaluate its effectiveness. The primary outcomes are agitation and aggression and other NPS. The secondary outcomes are PDU, quality of life, the workload of nursing staff and job satisfaction. Additionally, a process analysis and a cost-consequence analysis will be conducted.Conclusions:The study protocol of the Beyond-II study describes the development, implementation and evaluation of a care program for the management of NPS in institutionalized PwYOD. This care program provides a structured method for the management of NPS, in which unmet needs and PDU are also addressed.

scholarly journals SAT0643-HPR NURSE-LED CARE FROM THE PERSPECTIVE OF PEOPLE WITH EARLY RHEUMATOID ARTHRITIS: A QUALITATIVE SYSTEMATIC REVIEW

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1280.2-1281
Author(s):  
A. M. T. Sweeney ◽  
C. Mccabe ◽  
C. Flurey ◽  
J. Robson ◽  
A. Berry ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Systematic Review ◽  
Systematic Reviews ◽  
Qualitative Studies ◽  
Easy Access ◽  
Nurse Specialist ◽  
Care Needs ◽  
Thematic Synthesis ◽  
Early Ra ◽  
Qualitative Systematic Review

Background:Nurse-led care has been shown to be clinically effective and cost effective in rheumatoid arthritis (RA) but the role of the nurse in early RA is not well defined. Evidence for processes of care in RA is limited and it is not known how well rheumatology nurse-led clinics meet care needs of people with early RA.Objectives:The aim of this study was to develop an understanding of rheumatology nurse-led care from the perspective of people with early RA.Methods:A qualitative systematic review was conducted. The review protocol is published in the International prospective register of systematic reviews.In March 2019, the following databases were searched: MEDLINE, EMBASE, CINAHL, PsycINFO and OpenGrey. Due to lack of studies in early RA this review included adults with early and established inflammatory arthritis, qualitative studies with data on patients’ perspectives of nurse-led care, published in peer-reviewed journals in English between 2010 and 2019. Two reviewers screened titles, abstracts and full texts. Data were extracted and managed in tables. Joanna Briggs Institute Critical Appraisal Checklist was used for quality assessment of the included studies. A thematic synthesis was undertaken using the framework of Thomas and Harden.1Results:The search identified 1034 records. After screening and assessing for eligibility, 8 qualitative studies were included in the review (133 patients), 2 studies included people with early RA. Three main themes were identified (Figure 1).Figure 1.Themes of nurse-led care from the perspective of people with RAProviding knowledge and skill. This theme delineated rheumatology nursing as providing professional expertise in the planning and delivery of care. The rheumatology nurse-led service included easy access via telephone helpline, consultations with the clinical nurse specialist for assessment of disease activity and care needs, planning of care, disease information and education, supporting self-management, and referral to rheumatologist and the multi-disciplinary team. People with RA highly valued the nurse expertise and specialist knowledge provided at nurse-led clinics.‘She was very good at informing me, so I have only praise for this ... because I have never had it like this before’. (Person with early RA).Using a person-centred approach.This theme showed nurse-led care using a person-centred approach combined with empathy and good communication skills, which created a good therapeutic environment. People with RA appreciated the person-centeredness, empathy and involvement of the nurse. ‘She is very sensitive. She can see if I am feeling bad and comes straight to me and asks: “How are you today?” ...You are treated and taken seriously’. (Person with early RA).Meeting patients‘ care needs. This theme presented nurse-led care as creating a sense of being empowered and psychologically supported in the management of RA and its impact. Nurse-led care made people with RA feel cared for, secure and confident. It added value to rheumatology care and made care complete.‘The thought of sticking a needle into my own stomach... it felt a bit like I would never manage to do that. However, they have been absolutely wonderful here ... and now I can do it myself’. (Person with early RA).Conclusion:Nurse-led care for people with RA is characterised by provision of rheumatology expertise using a person-centred approach, and patients‘ holistic care needs are being met. This study found a dearth of literature on perceptions of nurse-led care in people with early RA, which highlights the need for further research in this population.References:[1]Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews.BMC Med Res Methodol2008; 8: 45.Disclosure of Interests:Anne-Marie Tetsche Sweeney: None declared, Candy McCabe: None declared, Caroline Flurey: None declared, Joanna Robson: None declared, Alice Berry: None declared, Pamela Richards: None declared, Mwidimi Ndosi Grant/research support from: Bristol Myers Squibb, Consultant of: Janssen, Pfizer

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