‘Living Together With Dementia’: preliminary results of a training programme for family caregivers

Abstract

Living Together With Dementia': preliminary results of a training programme for family caregivers The aim of this article was to present the preliminary results of a training programme for family caregivers of people with dementia at an early to moderate stage living at home-'Living Together With Dementia'. In this randomised controlled trial, 27 family caregivers who met the inclusion criteria were recruited from the neurology outpatient consultation clinic of a hospital in the north of Portugal and randomised into two groups (control and experimental) between October 2015 and March 2016. The programme 'Living Together With Dementia' was applied to the participants of the experimental group. The strategies used, overload, difficulties and satisfaction of the caregivers were assessed at three different stages (at the beginning and end of the intervention, as well as at follow-up). For the data analysis, quantitative parametric measures were applied. The Health Ethical Commission of the Hospital Centre approved the study, and its protocol and Helsinki Declaration ethical principles were considered throughout the process. In the final assessment, an improvement in the overload and difficulties was confirmed, as was an increase in the caregivers' satisfaction level and an improvement in coping/problem-solving strategies. In the follow-up stage, the results tended to revert towards those of the initial assessment. The programme 'Living Together With Dementia' appeared to be a major contribution enabling family caregivers of people with dementia, although there is a need to develop an efficacy study using a more substantial sample. The programme contributed to a reduction in the overload and difficulties borne by the family caregivers of people with dementia at an early to moderate stage living at home and to increased caregiver satisfaction.

Impact of the COVID-19 outbreak on the difficulties and burden experienced by family caregivers of older dependent persons

“…Concerning the profile of dependent older persons involved in the present study, a majority were women with an average age of 79 years, and in most cases (40%) were diagnosed with dementia. This is in line with the Organization for Economic Cooperation and Development (2019) report, as well as other national and international studies, which found women to be the main caregivers (Sousa et al, 2020a;Ara ujo et al, 2018;Pego and Nunes, 2018) and dementia as a more prevalent illness of older persons (Livingston et al, 2020;Sousa et al, 2020b;Pego and Nunes, 2018;Musich et al, 2017). Concerning older adults, in isolation and those with cognitive decline/dementia, the WHO alerts about the likelihood of increased anxiety, anger, stress, restlessness and withdrawn during the outbreak or while To what extent have the restrictions imposed by the Coronavirus pandemic changed your routines as a caregiver?…”

“…The main results of this study show that the family caregivers participants were mostly women aged over 50 years, in the working age and devoting more than 8 h per day to care. These results corroborate well-known current evidence about this topic (Sousa et al , 2020a, 2020b; Araújo et al , 2018), as well as with a more recent report from the Organization for Economic Co-operation and Development (Organization for Economic Co-operation and Development, 2019), in which Portugal has the greatest gender imbalance, with over 70% of informal carers being women. The report also shows that concerning the average number of hours devoted to care by caregivers, there was a significant increase of about 6% during the pandemic outbreak, considering a statistically significant value (Organization for Economic Cooperation and Development, 2019).…”

“…Regarding the prevention of transmission of COVID-19, the majority of participants (69.2%) responded” agree” or” strongly agree”, reporting the difficulties of implementing the planned measures, also due to the pathology (dementia) causing dependence on the family member (61.5%). Despite little existing evidence, other studies (Sousa et al , 2020a, 2020b) report an increased burden on caregivers of elderly people with cognitive decline. Our experience has revealed that many caregivers experienced the uncertainty of the pandemic, without precise COVID-19 prevention guidelines.…”

Trajetória da prestação de cuidados familiares a pessoas idosas com dependência

“…Cuidadores em coabitação prestam geralmente cuidados de forma intensa e prolongada, sendo a oportunidade de descanso menor, quando comparados com cuidadores que não coabitam com o recetor de cuidados ou com cuidadores formais. (5) "O cuidado continuado impõe uma condição física, emocional, social e encargo económico para os cuidadores e família," (6) existindo relação significativa entre a sobrecarga percebida pelo cuidador e as caraterísticas sociodemográficas, clínicas e as necessidades de cuidados a prestar. (7) O efeito da prestação de cuidados não se restringe ao cuidador familiar (CF).…”

“Living Together with Dementia”—A psychoeducational group programme for family caregivers

“…The entire programme was built and validated within a conceptual framework using a focus group, integrative literature review, and a Delphi study (Sousa et al, 2018(Sousa et al, , 2016a(Sousa et al, , 2016b. A randomised controlled trial protocol was developed to address its experimental validation, after which a short-term efficacy study took place (Sousa et al, 2020).…”