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

Hendriks, Stevie; Peetoom, Kirsten; Verhey, Frans R.J.; Vugt, Marjolein de; Koehler, Sebastian; PRECODE‐Consortium,

doi:10.1002/alz.042738

Cited by 43 publications

(74 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…We did not identify any recommendations related to pregnancy and maternity. This is not surprising as it is rare for people with dementia to be young enough to be pregnant as most people with young-onset dementia are over 50 [ 88 ]. We found no recommendations related to marriage and civil partnership.…”

Section: Discussionmentioning

confidence: 99%

Protection against discrimination in national dementia guideline recommendations: A systematic review

et al. 2022

View full text Add to dashboard Cite

Background National dementia guidelines provide recommendations about the most effective approaches to diagnosis and interventions. Guidelines can improve care, but some groups such as people with minority characteristics may be disadvantaged if recommended approaches are the same for everyone. It is not known if dementia guidelines address specific needs related to patient characteristics. The objectives of this review are to identify which countries have national guidelines for dementia and synthesise recommendations relating to protected characteristics, as defined in the UK Equality Act 2010: age, disability, gender identity, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation. Methods and findings We searched CINAHL, PsycINFO, and Medline databases and the Guideline International Network library from inception to March 4, 2020, for dementia guidelines in any language. We also searched, between April and September 2020, Google and the national health websites of all 196 countries in English and in each country’s official languages. To be included, guidelines had to provide recommendations about dementia, which were expected to be followed by healthcare workers and be approved at a national policy level. We rated quality according to the iCAHE guideline quality checklist. We provide a narrative synthesis of recommendations identified for each protected characteristic, prioritising those from higher-quality guidelines. Forty-six guidelines from 44 countries met our criteria, of which 18 were rated as higher quality. Most guidelines (39/46; 85%) made at least one reference to protected characteristics, and we identified recommendations relating to age, disability, race (or culture, ethnicity, or language), religion, sex, and sexual orientation. Age was the most frequently referenced characteristic (31/46; 67%) followed by race (or culture, ethnicity, or language; 25/46; 54%). Recommendations included specialist investigation and support for younger people affected by dementia and consideration of culture when assessing whether someone had dementia and providing person-centred care. Guidelines recommended considering religion when providing person-centred and end-of-life care. For disability, it was recommended that healthcare workers consider intellectual disability and sensory impairment when assessing for dementia. Most recommendations related to sex recommended not using sex hormones to treat cognitive impairment in men and women. One guideline made one recommendation related to sexual orientation. The main limitation of this study is that we only included national guidelines applicable to a whole country meaning guidelines from countries with differing healthcare systems within the country may have been excluded. Conclusions National guidelines for dementia vary in their consideration of protected characteristics. We found that around a fifth of the world’s countries have guidelines for dementia. We have identified areas of good practice that can be considered for future guidelines and suggest that all guidelines provide specific evidence-based recommendations for minority groups with examples of how to implement them. This will promote equity in the care of people affected by dementia and help to ensure that people with protected characteristics also have high-quality clinical services.

show abstract

Section: Discussionmentioning

confidence: 99%

Protection against discrimination in national dementia guideline recommendations: A systematic review

et al. 2022

View full text Add to dashboard Cite

show abstract

“…In our meta-analysis, the heterogeneity between studies was substantial, with many analyses showing I 2 > 80%. Previous meta-analyses on prevalence studies have reported similar results (65,66). The subgroup analyses failed to determine the reasons for this significant heterogeneity.…”

Section: Discussionmentioning

confidence: 92%

Prevalence of Sarcoidosis-Associated Pulmonary Hypertension: A Systematic Review and Meta-Analysis

Zhang

Xiang

Zhang

et al. 2022

Front. Cardiovasc. Med.

View full text Add to dashboard Cite

BackgroundSarcoidosis-associated pulmonary hypertension (SAPH) is associated with poor prognosis, conferring up to a 10-fold increase in mortality in patients with sarcoidosis, but the actual prevalence of SAPH is unknown.MethodsThe PubMed, Embase, and Cochrane Library databases were systematically searched for epidemiological studies reporting the prevalence of SAPH up to July 2021. Two reviewers independently performed the study selection, data extraction, and quality assessment. Studies were pooled using random-effects meta-analysis.ResultsThis meta-analysis included 25 high-quality studies from 12 countries, with a pooled sample of 632,368 patients with sarcoidosis. The prevalence of SAPH by transthoracic echocardiography in Europe, the United States and Asia was 18.8% [95% confidence interval (CI): 11.1–26.5%], 13.9% (95% CI: 5.4–22.4%) and 16.2% (95% CI: 7.1–25.4%) separately, and the overall pooled prevalence was 16.4% (95%CI: 12.2–20.5%). By right heart catheterization (RHC), the pooled prevalence of SAPH was 6.4% (95% CI: 3.6–9.1%) in general sarcoidosis population, and subgroup analyses showed that the prevalence of SAPH was 6.7% (95% CI: 2.4–11.0%) in Europe and 8.6% (95% CI: −4.1 to 21.3%) in the United States. Further, the prevalence of pre-capillary PH was 6.5% (95% CI: 2.9–10.2%). For the population with advanced sarcoidosis, the pooled prevalence of SAPH and pre-capillary PH by RHC was as high as 62.3% (95% CI: 46.9–77.6%) and 55.9% (95% CI: 20.1–91.7%), respectively. Finally, the pooled prevalence of SAPH in large databases with documented diagnoses (6.1%, 95% CI: 2.6–9.5%) was similar to that of RHC. Substantial heterogeneity across studies was observed for all analyses (I2 > 80%, P < 0.001).ConclusionsThe sarcoidosis population has a relatively low burden of PH, mainly pre-capillary PH. However, as the disease progresses to advanced sarcoidosis, the prevalence of SAPH increases significantly.

show abstract

“…Experiences in the Netherlands are that service providers are also hesitant to design services for a "new" target group, because of the initial increase in costs that accompany the development of dedicated services. Also, the fact that the target group of these services is only an approximate 5% of all people living with dementia 11 probably further raises barriers for the establishment of such services.…”

Section: Service Provision In Young-onset Dementiamentioning

confidence: 99%

“…Based on a recent meta-analysis of international prevalence studies, estimates can be made that currently 14,000 to 17,000 people live with young-onset dementia in the Netherlands. 11 Because of the low prevalence, in the Netherlands postdiagnostic care and support in young-onset dementia is organized at the regional level with a hub-and-spoke approach in which one of the larger health care organizations together with smaller local partners offer services and support after the diagnosis. Guidelines and care standards are developed at the national level.…”

Section: Service Provision In Young-onset Dementiamentioning

confidence: 99%

Reimagining Postdiagnostic Care and Support in Young-Onset Dementia

Bakker¹,

Verboom²,

Koopmans³

2022

Journal of the American Medical Directors Association

View full text Add to dashboard Cite

Although dementia has a profound impact in general, young-onset dementia causes additional problems and challenges as people are affected in their prime years. Awareness has increased that people with young-onset dementia and their families have specific care needs and dedicated services are necessary to accommodate those needs. However, in many countries, age-appropriate care and support for people with young-onset dementia is still largely unavailable. In this special article, barriers as well as facilitators for the development of postdiagnostic care and support in young-onset dementia are addressed. Drawing from the experiences in the Netherlands, the establishment of an appropriate infrastructure has proven a corner stone in service development in young-onset dementia. The establishment of a center at the national level for the development and dissemination of knowledge and affiliated regional centers that coordinate and offer care and support at the regional level has helped to reimagine, redefine, but more importantly also rearrange, postdiagnostic care and support in young-onset dementia in the Netherlands. This has resulted in care standards for service provision in young-onset dementia that have been incorporated in the dementia standard at the national level. Also, a quality hallmark has been developed to guide the arrangement of age-appropriate services at the local level. Moreover, specific training programs are in place for health care professionals involved in young-onset dementia. To be able to prioritize topics in research for the upcoming years, a scientific agenda has been established. The strong collaboration between organizations that provide a voice for people with dementia, care providers and research centers, that all strive to support people to live well with young-onset dementia has boosted these developments and may inspire other countries searching for ways to improve postdiagnostic care and support in young-onset dementia.

show abstract

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

Cited by 43 publications

References 0 publications

Protection against discrimination in national dementia guideline recommendations: A systematic review

Protection against discrimination in national dementia guideline recommendations: A systematic review

Prevalence of Sarcoidosis-Associated Pulmonary Hypertension: A Systematic Review and Meta-Analysis

Reimagining Postdiagnostic Care and Support in Young-Onset Dementia

Contact Info

Product

Resources

About