Does Reality Overcome the Expected? Survey on Informal Caregivers' Profile: A Nurse-Led Study in Times of COVID-19.

The increasing overload of chronic conditions raises challenges for the health system. Informal caregivers have a major role in ensuring the quality of life of the cared-for person, despite the reported lack of working resources which can lead to unmet needs. This article reports on the first part of a nurse-led research project entitled ''Informal caregiver' profiles in Lisbon county: a health community approach.' We aimed to support decision-making by developing an informal caregiver profile to promote tailored interventions. A survey addressing the dyad was developed and submitted to a convenient, network-based, stratified sample of carers aged 18 years or above. More than thirty community partners supported the identification of caregivers. Data were submitted to univariate descriptive analysis. A profile of the cared-for person and the informal caregiver was uncovered by identifying 639 caregivers, of whom the majority lived with the cared-for person. Only four percent planned the transition to a caregiver role, and no more than 10% had access to support programs. Approximately half of the respondents found that COVID-19 negatively impacted their performance in the caregiver role. Developing a local and tailored strategy with collaboration between healthcare professionals, academics, and community partners is key to ensuring that meaningful support is provided to caregivers.

Informal Caregivers' Health Literacy in Lisbon, Portugal: A Profile for Health Promotion Prioritization.

Health literacy (HL) allows people to access, understand and evaluate health information. Informal caregivers' levels of HL may impact long-term care outcomes. 'Informal caregivers' profile in Lisbon county: a health community approach' is a nurse-led research project aiming to assess informal caregivers' health literacy and associated factors in Lisbon county, as well as to foster the development of a local-specific health literacy strategy. A survey to identify a health/social caregiver profile, including questions about HL (HLS-EU-PT), was submitted to a representative sample of carers. Descriptive and bivariate inferential analysis was developed. Informal caregivers' level of HL was mostly sufficient (n = 99, 38%). More than 60% of caregivers have limited HL regarding health promotion. 'Access', 'Appraisal' and 'Use' are the information processing stages with lower mean scores of HL. Carers with low HL levels appear to be older and to have less education, low knowledge of community resources and decreased wellbeing (p < 0.05). A strategy focused on health promotion-related HL through primary care resources can potentially improve caregivers' knowledge, competencies and motivation, as well as health system sustainability. Reported HLS-EU-PT scores deserve special attention. Future work should emphasize the role of HL-associated factors and health outcomes for caregivers and cared-for persons.

Personality of the caregiver influences the use of strategies to deal with the behavior of persons with dementia.

Personality of family caregiver is an important factor influencing the caregiver's burden, depression and distress. We now hypothesized that the personality is associated with specific strategies used by family caregivers to deal with the behavioral and psychological symptoms of demented relatives (BPSD). Participants were 98 consecutive persons with dementia and their family caregivers. Assessments included: Personality (NEO-FFI), Burden (ZBI), Depression (CES-D), Cognitive Function (MMSE), BPSD (NPI), Distress (NPI-D), and an open question to identify the strategies used by caregivers when faced with BPSD. Caregivers used different strategies to cope with their relatives' behavior: avoiding conflict; confronting; reassuring; orienting; responding coercively; distracting; colluding; medicating and restricting the movements. Extraversion was the only dimension of caregiver's personality that determined the use of caregiver strategies to deal with BPSD. Extroverted caregivers used the "confronting" strategy less often. Caregiver's personality should be taken into account when designing adapted intervention programs.

Influence of personality on caregiver's burden, depression and distress related to the BPSD.

OBJECTIVE: We hypothesize that the personality influences the caregiver's depression, burden and distress related to BPSD. SUBJECTS AND METHODS: Participants were 105 consecutive patients with dementia and their family caregivers, living at home, attending a Dementia Clinic. A cross-sectional design was used with an applied a structured interview at home. Comprehensive assessments included: personality (NEO-FFI), burden (ZBI), depression (CES-D) and distress related to BPSD (NPI-distress). Statistical Path analysis was used to study the hypothetical causal and mediating effects between independent and criterion variables. RESULTS: Neuroticism increased, whereas extraversion decreased, both caregiver's depression and burden. Agreeableness was also found to decrease the burden. The personality characteristics only indirectly influenced the caregiver's distress related to BPSD. CONCLUSION: These results reinforce the importance of including personality as an individual resource of the caregiver in the conceptual models and research on caregiving. Assessment of caregiver's personality characteristics should be taken into account for the planning of intervention programs.

A experiência vivida de homens (cônjuges) que cuidam de mulheres com demência / The living experience of male-spouse caregivers who care for women with dementia

Introdução: Os resultados de alguns estudos mostraram que o homem cuidador presta cuidados diferentes da mulher cuidadora, quer no volume, quer no tipo de cuidados, sugerindo que o gênero é uma variável que molda significativamente as experiências de cuidar em família. Objetivos: Descrever a experiência vivida pelos cuidadores (cônjuges) de mulheres que sofrem de demência. Metodologia: Efetuamos um estudo utilizando metodologia qualitativa, seguindo um percurso fenomenológico. Participaram 13 cuidadores (cônjuges) de mulheres com diagnóstico clínico de demência, que cuidavam dos seus familiares em domicílio familiar. A entrevista consistiu num conjunto de questões estruturadas, para caracterização da situação de cuidados, e a parte central teve como ponto de partida uma única questão que induzia a descrição da experiência de viver a situação em estudo. Resultados: A idade dos cuidadores oscilou entre 59 e 81 anos e a duração da prestação de prestação de cuidados, entre 3 e 15 anos. Apenas dois cuidadores mantinham atividade profissional. Quase todos (11) prestavam grande parte dos cuidados necessários para a satisfação das necessidades das doentes nas atividades de vida diária. A maioria dos cuidadores (9) estava isolada nos cuidados, não recebendo apoio instrumental, aconselhamento ou suporte emocional. Da análise qualitativa de conteúdo efetuada, extraíram-se os seguintes temas: experiências prévias, percurso conjugal e decisão para cuidar. Conclusão: O momento de decisão para cuidar parece constituir um elemento fundamental na experiência de cuidar do homem e, provavelmente, a maior diferença de cuidar no masculino do cuidar no feminino.

Introduction: The results of some studies have shown that the male caregiver provides different care as compared to female caregivers, either in volume or the type of care, suggesting that gender is a variable that significantly shapes the experiences of family care. Objectives: To describe the experience lived by caregivers (spouses) of women who suffer from dementia. Methodology: We carried out a study using qualitative methodology, following a phenomenological sense. Participants were 13 caregivers (spouses) of women with clinical diagnosis of dementia, who cared for their relatives in the family home. The interview consisted of a structured questionnaire to characterize the situation of care, and the central part had as starting point a single issue that prompted the description of the experience of living the situation under study. Results: The age of caregivers ranged from 59 to 81 years and the duration of the provision of care, between 3 and 15 years. Only two caregivers held professional activity. Almost all (11) offered much of the care required to meet the needs of patients in activities of daily living. Most caregivers (9) were isolated in care, not receiving instrumental support, advice or emotional support. From the qualitative analysis performed, the following topics arose: previous experience, background and marital decision to care. Conclusion: The turning point for care seems to be a fundamental element in the experience of caring for the man, and probably the biggest difference between male care and female care.

The CD8+ T-lymphocyte profile as a modifier of iron overload in HFE hemochromatosis: an update of clinical and immunological data from 70 C282Y homozygous subjects.

Hereditary hemochromatosis (HH) is a clinically heterogeneous disease. Among other factors, the individual immunological profile of CD8+ T-lymphocytes has been described to influence the severity of iron overload, with low numbers being negatively correlated with the total amount of body iron stored. With the objective of testing the modifier effect of the individual CD8+ T-lymphocyte profile on the levels of iron stores with age in HH, we reviewed the clinical and immunological data from a group of well-characterized C282Y homozygous HH subjects, regularly followed-up for a period of 20 years. A total of 70 subjects were analyzed. Sixty-four were adults (> or = 18 years): 42 males (mean age 47 +/- 14; range 22-75 years) and 22 females (mean age 46 +/- 14; range 19-65 years). Six were younger than 18 years, 5 males (mean age 9 +/- 4; range 5-14 years) and 1 female (15 years). The characterization of subjects included measurements, at diagnosis, of the iron parameters, transferrin saturation (TfSat) and serum ferritin, quantification of total body iron stores (TBIS) removed by phlebotomies, presence of associated clinical manifestations, and the T-cell immunophenotype (CD4+ and CD8+ T-lymphocytes) determined by flow cytometry. In general, statistically significant lower values of TfSat (67 +/- 17% vs. 89 +/- 14%, P = 0.0006) and ferritin levels (58 +/- 9 vs. 949 +/- 233 ng/ml, P = 0.02) were found in the young subjects in comparison to adults. After the age of 18, however, no further effect of age was significantly found on the biochemical iron parameters either in males or females. A modifier effect of the individual CD8+ T-lymphocyte profile on the association between iron stores and age was demonstrated by multiple regression analysis, where a significant correlation between TBIS and age was found only in males with low (< or = 0.41 x 10(6)/ml) CD8+ T-cell numbers (R2 = 0.43, P < 0.0001). In conclusion, in the present population of C282Y homozygous subjects, the CD8+ T-lymphocyte profile could be considered a modifier of the iron overload with increasing age in males, with low numbers predicting a severe outcome.