Health literacy of family caregivers of the older adults with Dementia due to Alzheimer’s: a cross-sectional study (Preprint)
Authors: Sousa Fabianne , Pereira Sofia do Vale , Oliveira Catarina Resende , Costa Isabel , Oliveiros Barbara , Pereira Miguel Tábuas , Durães João , Augusto Berta , Santana Isabel , Pinto Anabela Mota 
Published: April 2024

BACKGROUND

Family caregiving in dementia is frequent today, with important economic, social, and human implications. In Europe, there is a trend towards keeping older adults, namely those with dementia, at home. Family caregivers face dramatic challenges, that may be mitigated by specific-training and health literacy.

OBJECTIVE

To assess the level of health literacy of the older adults with Dementia due to Alzheimer’s disease (AD-d) family caregivers.

METHODS

Cross-sectional, exploratory, non-interventional, descriptive and analytical study with a non-random sample of 107 family caregivers of elderly people diagnosed with AD-D followed at the Neurology Service of the Centro Hospitalar e Universitário de Coimbra, Portugal. The following were used: a sociodemographic questionnaire and The Alzheimer's Disease Knowledge Scale to assess the level of knowledge about AD. The description of qualitative data was done using absolute and relative frequencies, while quantitative variables were described using mean (SD) and median. The total values for each dimension and the total scale, which constitute the total number of correct answers in each dimension and in total, were converted into percentages to be comparable to each other. The distribution of each of the dimensions and the total scale was evaluated using the Shapiro-Wilk test, there were large deviations from normality, and the Mann-Whitney test was applied to compare these scores in relation to binary variables, the Kruskal test -Wallis when there were 3 or more categories and Spearman correlation to assess the relationship between these and the age of caregivers and patients. The analysis was carried out using the SPSS program, version 27, at a significance level of 5%.

RESULTS

Of the 107 respondents, 67.3% were female, had an average age of 60.8 (±14.0) years, 84.1% were married and 32.7% had completed high school .The majority self-assessed their health as good (46.7%), cared for their parents, spouse and/or partner (43.9%), had no prior knowledge about AD (74.8%) and sought information about AD with health professionals (72.9%). Regarding the the level of knowledge of caregivers family members about Alzheimer's disease is between 63.3% and 70%. The highest scores were found in the “Symptoms” domain (80.6±21.0) followed by “Development and progression” (79.7±15.8), and the lowest in the “Being a caregiver” domain (53.8±19.3) followed by “Risk factors” (55.6±24.1). Associations were found between: “Impact on the patient’s life” domain and prior knowledge of the disease (P=0.022); The “risk factors” were associated with length of time as caregiver (P<0.001), time since diagnosis (P=0.001), stage of diagnosis (P=0.003) and male sex (P=0.001); “Symptoms” was associated with time working as a caregiver (P=0.034) and time since diagnosis (P=0.014); “Treatment” associated with education (P=0.002), relationship with the caregiver (P=0.007); “Being a caregiver” associated with education (P=0.007), time and relationship with the caregiver (P=0.05, P=0.046), respectively; “Assessment and diagnosis” associated with education (P=0.002), gender (P =0.007) and prior knowledge of AD (P=0.041) and relationship with the caregiver (P=0.008). “Development and progression of the disease” associated with education (P=0.025), time as a caregiver (P=0.013), having prior knowledge about AD (P =0.038), seeking information from health professionals (p=0.002) and diagnosis time (P =0.002).

CONCLUSIONS

The results show a satisfactory level of knowledge about AD with an association between variables of interest and the ADKS scale. The study highlighted the health literacy gap in the domain of being a caregiver, pointing to the need related to education and training in this domain.