Costs derived from dementia are significant, mostly provided by families. These costs have a high impact on caregivers' economy and wellbeing, who, as the disease progresses, feel an increase in burden, stress, depression, anxiety, and social isolation. In this vulnerable situation, there is a need to implement support programs that help meet their needs, aligning with the World Health Organization global action plan. Caregiver support programs have demonstrated extensive beneficial effects on health. Thus, the current project proposes creating a Carer Portal designed to improve wellbeing.
This pilot project is a proactive clinical trial, personalized and scalable, testing the feasibility of the program. Participants are primary carers of a patient suffering from Alzheimer's disease, with an available internet connection at home. We collect information on burden, anxiety, depression, sleep, and wellbeing from the participants at the beginning, 6th, and 12th months. During the study, we are still personalizing the Portal, to better fit participants' needs, and look out for inefficiencies and improvements. This continuous personalization through a feedback-loop process, is creating a tool FOR and BY caregivers.
We created the web-portal with following content:
- General information about the disease and connections with local services.
- Tips for the caregiver. Information about caregiver overload syndrome and some tips to minimize the symptoms.
- Psychoeducational area. Here we include some behavioral symptoms (e.g., agitation, aggressiveness, continuous wandering, etc.) and how to address them at home.
- Sleep disturbances. Insomnia is one of the most frequent complaints in consultation, so we dedicate a special section explaining the possible causes and how to reduce it.
- "Brain training." Easy to administer neuropsychological activities to do at home with patients.
- Mindfulness. This section briefly explains how to practice meditation in our own homes. We will also complement it with webinars if it is interesting for web users.
- Nutrition. We explain which foods are most beneficial for good "brain health."
- Exercise and Physiotherapy at home. As we know, physical exercise also delays cognitive decline and improves the physical and psychological well-being of patients with dementia and their caregivers, so we want to focus on it. It shows how we can do small exercises with our family members at home.
- Legal and economic resources. This is one of the main problems in Spain. We do not have specific help for patients with dementia, but we explain what help our patients can benefit from and how to apply for it.
- Regular e-mail contact with the multidisciplinary team. Participants will have the possibility to raise any questions/concerns to the outpatient clinic team. The specialized nurse or the doctor will review e-mails regularly (Monday to Friday) and, when required, contact participants via e-mail reply or phone within two business days.
- Webinars. This section will schedule 12 webinars, complementing information and resources available on the Portal.
The study is a randomized interventional clinical trial, including 60 controls (usual follow-up at outpatient clinic only), and 60 participants at the intervention group (using the Web-Portal and usual follow-up).
We will evaluate the feasibility and satisfaction in the use of the Care Portal, and we will compare anxiety, depression, sleep disturbances, burden, quality of life and wellbeing in both groups.
The results of this pilot study will guide us to create a caregiver-centered and cost-effective Web-Portal, designed to improve caregivers' quality of life and well-being. we will implement policy and clinical practice solutions over the Andalusian Spanish region, and we will lead to the creation of a national framework to mitigate burden and improve caregivers' wellbeing.