Empowering patients with dementia to make legally effective decisions: a randomized controlled trial on enhancing capacity to consent to treatment.

Objectives: As our society ages, the incidence of age-related diseases increases and with it the number of medical treatments that require informed consent. Capacity to consent is often categorically questioned in persons with dementia (PwD) without appropriate assessment, depriving them of their right to autonomous decision-making. Supportive structures for PwD that comply with legal requirements are lacking. The EmMa project tried to overcome this shortcoming by developing and testing possible supportive measures to enhance the informed consent process for PwD.Method: These enhanced consent procedures (ECPs) were tested in a randomized controlled trial with 40 PwD. It was hypothesized that strengths-based ECPs could improve capacity to consent to a drug treatment in PwD as measured with a semi-structured interview.Results: Against the expectations, no effect of the ECPs on capacity to consent could be found, but the ECPs improved understanding of information in PwD.Conclusion: To empower PwD in clinical settings, however, all aspects of capacity to consent should be targeted with specific aids that are implemented carefully and selectively. More research on possible aids for ECPs is urgently needed in order to enable ethically and legally robust informed consent. In particular, effective ways to improve both reasoning and appreciation are yet to be found.

Observational assessment of communication to empower patients with dementia to make legally effective decisions - revalidation of CODEMamb.

Objectives: Communication enables humans to exercise their rights. Dementia research consistently shows that communication skills decrease as the disease progresses. Nonverbal communication abilities decline more slowly than verbal skills and often become more important as the disease advances. However, resources and deficits in nonverbal and verbal communication behavior differ between persons with dementia and contexts. Knebel et al. proposed the observational assessment tool CODEMamb that we believe to be the first standardized instrument to differentiate between content-related and relationship aspects of nonverbal communication behavior. Until now, evaluations of CODEMamb have been exploratory and used small samples.Method: We therefore retested the psychometric criteria of CODEMamb in persons with a suspected dementia in an ambulatory setting. Data was drawn from 326 older adults (aged 52 - 91) during routine screening in Germany.Results: Our findings support the three-factorial structure of CODEMamb. Internal consistency of the overall scale and the three subscales of CODEMamb was high. Correlations with CERAD-NP subscales revealed similarities to CODEMamb, indicating sufficient convergent validity. Finally, CODEMamb was able to differentiate between persons according to the stage of their disease.Conclusion: CODEMamb is a theoretically based, reliable and valid observational assessment tool and its use in ambulatory settings can help foster individual, person-centered communication by identifying the resources of people with dementia, thereby empowering them in rights-exercising situations.

Advancing health literacy measurement in old age.

Health literacy is described as a domain of competence across the life-span, gaining particular prominence in light of age-associated health restrictions. However, no specific measurement approach has been proposed for old age. The aim of this study is to augment the existing HLS-EU-Q16 scale (16 items) by items sensitive to age-specific aspects of health literacy to ensure validity and reliability for use in old age. In a first step, the HLS-EU-Q16 was administered in a sample of 463 individuals aged 72 - 92 years. Psychometric properties were evaluated using confirmatory factor analysis and item-response-theory item fit statistics. Scale reliability was found to be poor in this population segment. In a second step, age-specific items were developed based on qualitative in-depth interviews with older persons. In a third step, we tested if the additional set of age-specific items was able to enhance a valid and reliable measurement of health literacy in a second sample of older adults (N = 107, 49 - 91 years). With the inclusion of an eight-item add-on, it was possible to measure health literacy in old and very old age with both high validity and satisfying precision (reliability = 0.80). The study contributes to a population-specific measurement of health literacy.

Communication behavior of cognitively impaired older inpatients : A new setting for validating the CODEM instrument.

BACKGROUND AND OBJECTIVE: Acutely ill older patients with cognitive impairment represent a major subgroup in acute care hospitals. In this context, communication plays a crucial role for patients' well-being, healthcare decisions, and medical outcomes. As validated measures are lacking, we tested the psychometric properties of an observational instrument to assess Communication Behavior in Dementia (CODEM) in the acute care hospital setting. As a novel feature, we were also able to incorporate linguistic and social-contextual measures. MATERIAL AND METHODS: Data were drawn from a cross-sectional mixed methods study that focused on the occurrence of elderspeak during care interactions in two German acute care hospitals. A total of 43 acutely ill older patients with severe cognitive impairment (CI group, Mage ± SD = 83.6 ± 5.7 years) and 50 without cognitive impairment (CU group, Mage ± SD = 82.1 ± 6.3 years) were observed by trained research assistants during a standardized interview situation and rated afterwards by use of CODEM. RESULTS: Factor analysis supported the expected two-factor solution for the CI group, i.e., a verbal content and a nonverbal relationship aspect. Findings of the current study indicated sound psychometric properties of the CODEM instrument including internal consistency, convergent, divergent, and criterion validity. CONCLUSION: CODEM represents a reliable and valid tool to examine the communication behavior of older patients with CI in the acute care hospital setting. Thus, CODEM might serve as an important instrument for researcher and healthcare professionals to describe and improve communication patterns in this environment.