Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care

Nakanishi, Miharu; Martins Pereira, Sandra; Van den Block, Lieve; Parker, Deborah; Harrison-Dening, Karen; Di Giulio, Paola; In der Schmitten, Jürgen; Larkin, Philip J; Mimica, Ninoslav; Sudore, Rebecca L; Holmerová, Iva; Korfage, Ida J; van der Steen, Jenny T

doi:10.1016/s2666-7568(24)00043-6

Cited by 2 publications

(1 citation statement)

References 46 publications

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“…Similar ndings were noted among Thai and Chinese people living in rural areas, who had higher prevalence of dementia symptoms [23,39]. The literature suggests that LMICs are not well prepare to care for, and support the anticipated future rise in the number of dementia patients and need for advance care planning [40]. Hence, there is a need to prioritise research in rural and underserved areas, as well as low resource settings areas to further establish the relationship between geographic region and dementia, along with the possible explanation for the differences.…”

Section: Geographic Regionsupporting

confidence: 55%

Risk of Dementia in Nepal: A Cross-Sectional Survey in Mountainous, Hilly, and Lowland Regions

Simkhada,

Magar,

Simkhada

et al. 2024

Preprint

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Introduction Globally dementia is a growing public health problem, with over 135,000 people in Nepal living with dementia. Nepal lacks national and community-based data on dementia prevalence. This study aims to determine the dementia risk in Nepal and assess the effects of age, sex, and geographical location on disease prevalence. It also intends to inform policy makers about the burden of dementia, prompting them to plan and prepare appropriate health and social care services for individuals affected by dementia. Methods A cross-sectional survey with total 1152 individuals (933 older people, aged 60 and over and 219 carers of 60 years and older people) was conducted to determine the prevalence of dementia risk in three geographical regions of Nepal. The Rowland Universal Dementia Assessment Scale (RUDAS) and Memory First Aid Informant Questionnaire adapted from Community Screening Interview for Dementia (CSI-D) for informant were used to measure cognitive impairment. The study evaluated the overall prevalence of cognitive impairment or risk of dementia and subgroups by region, age group, and sex. Chi-squared tests and multiple logistic regression analyses were conducted to assess the effects. Results For the RUDAS test, 53.7% (501) participants had cognitive impairment, with slightly higher rates in women (56.5%) than men (51.7%). For the Memory First Aid Informant Questionnaire/CSI-D for informant, 155 participants had cognitive impairment at a rate of 70.8%, with slightly higher rates in men. Cognitive impairment prevalence increases with age and region, with hilly and mountainous areas and low-lying regions having a greater geographic effect. Conclusions There is high risk of dementia in Nepal. The risk is influenced by age and geographical regions, necessitating early diagnosis and tailored interventions for older people and who are residing in higher altitude areas. National-level studies and exploration of factors affecting early dementia diagnosis are needed.

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Section: Geographic Regionsupporting

confidence: 55%

Risk of Dementia in Nepal: A Cross-Sectional Survey in Mountainous, Hilly, and Lowland Regions

Simkhada,

Magar,

Simkhada

et al. 2024

Preprint

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Dementia patients in palliative care according to data from the German National Hospice and Palliative Care Register (2009–2021)

Donath,

Ostgathe,

Heckel

2024

BMC Palliat Care

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Background People with dementia are less in focus of palliative care research than other patient groups even though the awareness of their palliative and end-of-life care needs is rising. Empirical data analyses on people with dementia in palliative care services are lacking. Aim To explore the prevalence of dementia diagnoses as per the ICD criteria among users of various palliative care settings and to compare use of palliative services, care pathways, and outcomes in people with and without a dementia diagnosis. Design We conducted retrospective analysis of dementia diagnoses as per ICD (F00-F03/G30) in the German National Hospice and Palliative Care Register between 2009 and 2021. The analysis used methods of descriptive and inferential statistics, including the Bonferroni correction for alpha error inflation. Setting/participants We limited the analysis to the subsample of people aged over 64. Results The prevalence of dementia in the different settings of palliative care was lower than in the age-comparable population: Of the 69,116 data sets included in the analysis, a small minority (3.3%) was coded with dementia as the principal diagnosis. Among patients on inpatient palliative care wards, 0.8% (148 of 19,161) had a dementia diagnosis, as did 2.2% (52 of 2,380) of those under hospital palliative care support teams and 4.3% (2,014 of 46,803) of those receiving specialized palliative care at home. Conclusions The records of the German National Hospice and Palliative Care Register suggest that the prevalence of dementia is lower than one might expect from general population data, though numbers are in line with international studies on proportion of dementia patients receiving palliative care. Future research could usefully examine whether this discrepancy stems either from omissions in coding dementia as patients’ principal diagnosis respectively from lapses in documentation of a dementia diagnosis previously made, or from barriers to accessing palliative care services or even displays being excluded from palliative care when trying to access it. Trial registration No registration.

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Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care

Cited by 2 publications

References 46 publications

Risk of Dementia in Nepal: A Cross-Sectional Survey in Mountainous, Hilly, and Lowland Regions

Risk of Dementia in Nepal: A Cross-Sectional Survey in Mountainous, Hilly, and Lowland Regions

Dementia patients in palliative care according to data from the German National Hospice and Palliative Care Register (2009–2021)

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