Dataset Information

Value of Personalized Dementia-Specific Quality of Life Scales: An Explorative Study in 3 European Countries.

ABSTRACT: Measuring Quality of Life (QOL) can be difficult due to its individual character. To explore the value of personalized QOL measurement for people with dementia, personalized versions of two dementia-specific QOL scales (Dementia quality of Life (DQoL) and Quaility of Life in Alzheimer's Disease (QoL-AD)) were constructed. This study investigated whether the personalized measures are more valid to detect variations in QOL than their standard versions for people with mild to moderate dementia, with sufficient internal consistency. Moreover, the relationship between the personalized QOL measures and severity of dementia was investigated. Finally, the study explored the differences between countries regarding the personalized overall QOL and differences in the importance of QOL domains. This explorative one-group design study used baseline data from the MEETINGDEM study into the implementation of the Meeting Centres Support Programme in Italy, Poland and the UK. The personalized versions of the DQoL and QoL-AD were reliable, but not more valid than their standard versions. No relationship between severity of dementia and personalized QOL was found. While no differences were found between countries for the overall QOL score, some QOL domains were valued differently: people with dementia from the UK rated self-esteem, mood, physical health, energy level and the ability to do chores around the house significantly less important than people from Italy and Poland. The personalized versions of the DQoL and QoL-AD may offer dementia care practice important insights into what domains contribute most to an individual's QOL.

SUBMITTER: Hendriks I

PROVIDER: S-EPMC10581102 | biostudies-literature | 2021 Jan-Dec

REPOSITORIES: biostudies-literature

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Publications

Value of Personalized Dementia-Specific Quality of Life Scales: An Explorative Study in 3 European Countries.

Hendriks Iris I Demetrio Raquel R Meiland Franka J M FJM Chattat Rabih R Szcześniak Dorota D Rymaszewska Joanna J Ettema Teake P TP Evans Shirley B SB Brooker Dawn D Evans Simon C SC Atkinson Teresa T Farina Elisabetta E Saibene Francesca L FL Gerritsen Debby L DL Dröes Rose-Marie RM

American journal of Alzheimer's disease and other dementias 20210101

Measuring Quality of Life (QOL) can be difficult due to its individual character. To explore the value of personalized QOL measurement for people with dementia, personalized versions of two dementia-specific QOL scales (Dementia quality of Life (DQoL) and Quaility of Life in Alzheimer's Disease (QoL-AD)) were constructed. This study investigated whether the personalized measures are more valid to detect variations in QOL than their standard versions for people with mild to moderate dementia, wit ...[more]

PMID: 34424058

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Project description:BackgroundTo integrate immigrants into their societies, European countries have adopted different types of policies, which may influence health through both material and psychosocial determinants. Recent studies have suggested poorer health outcomes for immigrants living in countries with poorly rated integration policies.ObjectiveTo analyse mortality differences of immigrants from the same country of origin living in countries with distinct integration policy contexts.MethodsFrom the mortality dataset collected in the Migrant Ethnic Health Observatory (MEHO) project, we chose the Netherlands (linked data from 1996-2006), France (unlinked; 2005-2007) and Denmark (linked; 1992-2001) as representatives of the inclusive, assimilationist and exclusionist policy models, respectively, based on the Migrant Integration Policy Index. We calculated for each country sex- and age-standardized mortality rates for Turkish-, Moroccan- and local-born populations aged 20-69 years. Poisson regression was used to estimate the mortality rate ratios (MRRs) for cross-country and within-country comparisons. The analyses were further stratified by age group and cause of death.ResultsCompared with their peers in the Netherlands, Turkish-born immigrants had higher all-cause mortality in Denmark (MRR men 1.92; 95% CI 1.74-2.13 and women 2.11; 1.80-2.47) but lower in France (men 0.64; 0.59-0.69 and women 0.58; 0.51-0.67). A similar pattern emerged for Moroccan-born immigrants. The relative differences between immigrants and the local-born population were also largest in Denmark and lowest in France (e.g., Turkish-born men MRR 1.52; 95% CI 1.38-1.67 and 0.62; 0.58-0.66, respectively). These patterns were consistent across all age groups, and more marked for cardiovascular diseases.ConclusionsAlthough confounders and data comparability issues (e.g., French cross-sectional data) may affect the findings, this study suggests that different macro-level policy contexts may influence immigrants' mortality. Comparable mortality registration systems across Europe along with detailed socio-demographic information on immigrants may help to better assess this association.

Project description:Quality of dementia care improves with a personalized approach to aged care, and knowledge of the disease process and unique care needs of residents with dementia. A personalized model of care can have a significant impact on the overall organizational culture in aged care homes. However, the dimensions of personalized aged care relating to dementia often remain under-managed. We aim to explore the factors that shape the dimensions of personalized dementia care in rural nursing homes using qualitative data of a mixed-method 'Harmony in the Bush' dementia study. The study participants included clinical managers, registered nurses, enrolled nurses and care workers from five rural aged care homes in Queensland and South Australia. One hundred and four staff participated in 65 semi-structured interviews and 20 focus groups at three phases: post-intervention, one-month follow-up and three-months follow-up. A multidimensional model of nursing home care quality developed by Rantz et al. (1998) was used in data coding and analysis of the factors. Three key themes including seven dimensions emerged from the findings: resident and family [resident and family centeredness, and assessment and care planning]; staff [staff education and training, staff-resident interaction and work-life balance]; and organization [leadership and organizational culture, and physical environment and safety]. A lack of consideration of family members views by management and staff, together with poorly integrated, holistic care plan, limited resources and absence of ongoing education for staff, resulted in an ineffective implementation of personalized dementia care. Understanding the dimensions and associated factors may assist in interpreting the multidimensional aspects of personalized approach in dementia care. Staff training on person-centered approach, assessment and plan, and building relationships among and between staff and residents are essential to improve the quality of care residents receive.

Dataset Information

Value of Personalized Dementia-Specific Quality of Life Scales: An Explorative Study in 3 European Countries.

Publications

Value of Personalized Dementia-Specific Quality of Life Scales: An Explorative Study in 3 European Countries.

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