Background The evaluation of care strategies at the end of life is particularly important due to the globally increasing proportion of very old people in need of care. The ICECAP-Supportive Care Measure is a self-complete questionnaire developed in the UK to evaluate palliative and supportive care by measuring patient’s wellbeing in terms of ‘capability’. It is a new measure with high potential for broad and international use. The aims of this study were the translation of the ICECAP-Supportive Care Measure from English into German and the content validation of this version. Methods A multi-step and team-based translation process based on the TRAPD model was performed. An expert survey was carried out to assess content validity. The expert panel (n = 20) consisted of four expert groups: representative seniors aged 65+, patients aged 65+ living in residential care, patients aged 65+ receiving end-of-life care, and professionals in end-of-life care. Results The German version of the ICECAP-Supportive Care Measure showed an excellent content validity on both item- and scale-level. In addition, a high agreement regarding the length of the single items and the total length of the questionnaire as well as the number of answer categories was reached. Conclusions The German ICECAP-SCM is a valid tool to assess the quality of life at the end of life that is suitable for use in different settings. The questionnaire may be utilized in multinational clinical and economic evaluations of end-of-life care.

Background: Dementia is one of the most common and most severe disorder in old age. In addition to cognitive decline and functional impairment, changes in social functioning occur in the course of dementia. Currently, there is no valid instrument in German language to assess social functioning in individuals with dementia. Objective: We aim to adapt and psychometrically evaluate a German version of the Social Functioning in Dementia Scale (SF-DEM). Methods: First, a multi-step and team-based translation process based on the TRAPD model was performed. Second, we interviewed dyads of individuals with mild dementia and caregivers to test the internal consistency, test-retest reliability, interrater reliability, construct validity, and acceptance of the German version of the SF-DEM. Results: The internal consistency of the patient-rated (α= 0.72) and the caregiver-rated (α= 0.76) SF-DEM is at an acceptable level. The interrater reliability was excellent for both versions (patients: ICC = 0.98, CI [0.95–0.99]; caregiver: ICC = 0.95, CI [0.89–0.98]) and the test-retest reliability was moderate (patients: ICC = 0.57, CI [0.26–0.77]; caregiver: ICC = 0.58, CI [0.27–0.78]). Caregiver-rated SF-DEM correlated strong with LSNS-6 (rs = 0.60, p < 0.01), QoL-AD (marriage: rs = 0.61, p < 0.01; friends: rs = 0.51, p = 0.01). In addition, the SF-DEM was accepted by the participants. Conclusion: The German SF-DEM is a valid, reliable, and acceptable instrument to assess social functioning in individuals with dementia. Further research should address the psychometric properties in individuals with more severe dementia.

PurposeSocial isolation is considered a risk factor for dementia. However, less is known about social isolation and dementia with respect to competing risk of death, particularly in the oldest-old, who are at highest risk for social isolation, dementia and mortality. Therefore, we aimed to examine these associations in a sample of oldest-old individuals.MethodsAnalyses were based on follow-up (FU) 5–9 of the longitudinal German study AgeCoDe/AgeQualiDe. Social isolation was assessed using the short form of the Lubben Social Network Scale (LSNS-6), with a score ≤ 12 indicating social isolation. Structured interviews were used to identify dementia cases. Competing risk analysis based on the Fine-Gray model was conducted to test the association between social isolation and incident dementia.ResultsExcluding participants with prevalent dementia, n = 1,161 individuals were included. Their mean age was 86.6 (SD = 3.1) years and 67.0% were female. The prevalence of social isolation was 34.7% at FU 5, 9.7% developed dementia and 36.0% died during a mean FU time of 4.3 (SD = 0.4) years. Adjusting for covariates and cumulative mortality risk, social isolation was not significantly associated with incident dementia; neither in the total sample (sHR: 1.07, 95%CI 0.65-1.76, p = 0.80), nor if stratified by sex (men: sHR: 0.71, 95%CI 0.28-1.83, p = 0.48; women: sHR: 1.39, 95%CI 0.77-2.51, p = 0.27).ConclusionIn contrast to the findings of previous studies, we did not find an association between social isolation and incident dementia in the oldest-old. However, our analysis took into account the competing risk of death and the FU period was rather short. Future studies, especially with longer FU periods and more comprehensive assessment of qualitative social network characteristics (e.g., loneliness and satisfaction with social relationships) may be useful for clarification.

Background: Social functioning is an important parameter for the early detection and diagnosis of dementia, as well as the description of its course and the assessment of intervention effects. Therefore, valid and reliable instruments to measure social functioning in individuals with dementia are needed. Objective: We aimed to provide an overview of such instruments including information on feasibility and psychometric properties. Methods: The review is informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Relevant literature was identified using a pre-specified search string in the databases MEDLINE, PsycINFO, and Web of Science. Information on the characteristics, feasibility, and psychometric properties of the identified instruments were extracted, summarized, and discussed. Results: Out of 5,307 articles, 8 were selected to be included in the study, describing a total of three instruments for measuring social functioning in individuals with dementia: the Nurses’ Observation Scale for Geriatric Patients (NOSGER; dimension “social behavior”), the Socioemotional Dysfunction Scale (SDS), and the Social Functioning in Dementia Scale (SF-DEM). The validity of all the three instruments was overall acceptable. Reliability was high for the NOSGER scale “social behavior” and the SF-DEM. Information on the usability of the instruments tended to be scarce. Conclusion: There are a few valid and reliable instruments to assess social functioning in individuals with dementia. Further considerations could comprise their feasibility with regard to measuring changes in social functioning over time, in additional target groups, e.g., different types and stages of dementia, and adaptions to different languages and cultural backgrounds.

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