On dementia, duties, and daughters. An ethical analysis of healthcare professionals being confronted with conflicts regarding filial duties in informal dementia care.

Background: Existing literature on moral conflicts that healthcare professionals encounter in dementia care has explored, amongst others, issues related to autonomy, decision-making capacity, privacy, and more. Notably, conflicts related to healthcare professionals who support informal dementia caregiving and who are confronted with family members being overburdened with their care responsibly remains an underexplored topic in the current literature, particularly in the context of Low-and Middle-Income Countries. The present paper introduces such an encounter, presenting an ethical case analysis of a conflict that occurred during a larger research project conducted in North Macedonia. Case to be studied: Due to the absence of formal care services that could have relieved an overburdened family caregiver, healthcare professionals felt compelled to reach out to the uninvolved adult daughters, requesting them to participate in their parents' care. Wondering about whether their reaching out to the daughters might count as an attempt of pressure and undue interference, professionals conflicted over the appropriateness of their action. This paper follows up on their concern, ethically assessing the professionals' action. To answer the question on whether the healthcare professionals acted appropriately or not, and to what extent, theories of filial duties are applied, embedding their action in the larger context of dementia care in North Macedonia. Results and conclusion: It is argued that the lack of formal care services in North Macedonia is of utmost relevance to the conflict. Thus, the conclusion is that the ethical inappropriateness of the case is to be located not so much with the action of the healthcare professionals but with the state because of its failure to provide professional care services that allow healthcare professionals to take ethically sound actions to counteract overarching burdens that family members face when providing informal dementia care.

North Macedonia interprofessional dementia care (NOMAD) - personalized care plans for people with dementia and caregiver psychoeducation delivered at home by interprofessional teams.

Introduction: The increasing number of people living with dementia and its burden on families and systems particularly in low- and middle-income countries require comprehensive and efficient post-diagnostic management. This study aimed to explore the acceptability and efficacy of a multi-professional case management and psychoeducation model (North Macedonia Interprofessional Dementia Care, or NOMAD) delivered by mobile teams for people with dementia and their caregivers in North Macedonia. Method: We conducted a two-arm randomized controlled trial comparing the intervention with treatment as usual. Participants were recruited from 12 general practitioner (GP) offices in the Skopje region. The NOMAD intervention included the delivery of a personalized care plan over four home visits to dyads of people with dementia and their caregivers by a team including a dementia nurse and a social worker, in collaboration with GPs and dementia experts, and the introduction of a caregiver manual. We assessed caregivers' depressive symptoms, burden, and quality of life and the neuropsychiatric symptoms, daily living activities, and service utilization of people with dementia at baseline and follow-up; we also assessed the acceptability of the intervention by analyzing case notes and attendance rates. Results: One hundred and twenty dyads were recruited and randomized to either the control (n = 60) or the intervention group (n = 60). At follow-up, caregivers in the intervention group had, on average, scores that were 2.69 lower for depressive symptoms (95% CI [-4.75, -0.62], p = 0.012), and people with dementia had, on average, 11.32 fewer neuropsychiatric symptoms (95% CI [-19.74, -2.90], p = 0.009) and used, on average, 1.81 fewer healthcare services (95% CI [-2.61, -1.00], p < 0.001) compared to the control group. The completion of the home visits was 100%, but the intervention's acceptability was underpinned by relationship building, GP competencies, and resources to support families with dementia. There were no differences in the caregivers' quality of life and burden levels or daily living activities in people with dementia. NOMAD is the first case management, non-pharmacological, and multi-professional intervention tested in North Macedonia. Discussion: The trial showed that it is effective in reducing caregivers' depressive symptoms and neuropsychiatric symptoms in people with dementia and the burden on health and social care services, and it is acceptable for families. Implementing NOMAD in practice will require building primary care capacity and recognizing dementia as a national priority.

Evaluation of APOE Genotype and Vascular Risk Factors As Prognostic and Risk Factors for Alzheimer's Disease and Their Influence On Age of Symptoms Onset.

BACKGROUND: Alzheimer's disease (AD), the most common cause of dementia, is evolving to become a threatening epidemy of the 21st century. Only 21% of the predicted number of AD patients in Macedonia have been diagnosed and treated, which means that almost 80% are underdiagnosed or misdiagnosed. Apolipoprotein E gene (APOE) is recognised as the strongest genetic risk factor for sporadic AD. Whether and when Alzheimer's disease develops, depends on the very complex interaction between genetic and modifiable risk factors. It has been known that vascular factors like hypertension, diabetes mellitus, hypercholesterolemia and obesity increase the risk of developing both AD, vascular dementia and mixed AD and vascular pathology. AIM: This study aims to evaluate the influence of APOEε4 allele presence and modifiable vascular risk factors (hypertension, diabetes mellitus and dyslipidemia) as prognostic and risk factors for AD and their influence on the age of onset of AD symptoms among 144 AD patients from Macedonia. MATERIAL AND METHODS: Study group of a total of 144 patients diagnosed with AD was evaluated. APOE genotyping was performed using APOE haplotype-specific sequence specific-primer (SSP)-PCR (Polymerase Chain Reaction) methodology. The non-standardized questionnaire was used to obtain information about demographics, lifestyle and modifiable risk factors that could influence disease onset and phenotype. RESULTS: Statistically significant association was found between the presences of APOEε4 allele in AD group versus controls. The presence of APOEε4 allele increases the risk of developing AD in a 3-fold manner. The average age of disease onset in the ε4 carrier group was 67.2 ± 8.3 and in the ε4 non-carrier group 69.7 ± 9.4. This confirms that the presence of APOEε4 allele shifts towards earlier disease onset, though the difference is not statistically significant. Out of the vascular risk factors, only hypertension was significantly associated with earlier AD onset. Out of total 144 patients, in 22.9% the first symptom onset was before the age of 65, that can be considered as early onset Alzheimer's Disease (EOAD), which is much higher than 5% for EOAD as most of the studies report. CONCLUSIONS: The average age of disease onset of 68.4 years could be considered earlier than the average age of AD onset worldwide. Out of all the vascular risk factors analysed in this study, only hypertension and dyslipidemia were found to significantly increase the risk for developing AD and only the presence of hypertension influences the age of onset, shifting towards earlier disease onset. Public awareness campaigns should be organised to influence general population knowledge about Alzheimer's disease, early recognition and the influence of modifiable vascular risk factors.