An Investigation of Information Sought by Caregivers of Alzheimer’s Patients on Online Peer-Support Groups

Abstract

Caregivers of Alzheimer's patients find respite in online communities for solutions and emotional support. This study aims to understand the characteristics of information caregivers of Alzheimer's 3 patients are searching for and the kind of support they receive through internet-based peer-4 support communities. Using a web crawler written in Python web programming language, we 5 retrieved publicly available 2500 random posts and their respective solutions from April 2012 to 6 October 2016 on the solutions category of the Caregiver's Forum on ALZConnected.org. A 7 content analysis was conducted on these randomly selected posts and 4,219 responses to those 8 posts based on a classification system derived from initial analyses of 750 posts and related 9 responses. The results showed most posts (26%) related to queries about Alzheimer's symptoms, and the highest percentage of responses (45.56%) pertained to caregiver well-being. The LIWC analyses generated an average tone rating of 27.27 for the posts, implying a negative tone and 65.17 for their responses, implying a slightly positive tone. The ALZConnected.org website has the potential of being an emotionally supportive tool for caregivers; however, a more user-friendly interface is required to accommodate the needs of most caregivers and their technological skills. Solutions offered on the peer support groups are often subjective opinions of other caregivers and should not be considered professional or comprehensive; further research on educating caregivers using online forums is necessary.

Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review

“…Of the types of dementia specified in this review, 35% of studies included dementia (7,(30)(31)(32)(33)(34)(35), 20% of studies included LBD (32,(35)(36)(37), 15% of studies included AD and other non-specific forms of dementia (30,32,35). However, 45% of studies did not specify the type of dementia (38)(39)(40)(41)(42)(43)(44)(45)(46). All 20 studies identified information needs irrespective of dementia types, however information seeking behaviour was only reported in 11 studies.…”

“…The three most commonly mentioned needs related to dementia were general information on dementia (10 studies, 62.5%) (34-37, 40-42, 44, 46, 47), dementia treatment (7 studies, 43.7%) (7,30,31,36,45,46,48) and identification and understanding of dementia symptoms and behaviour (6 studies, 37.5%) (7,37,42,44,45,48). Other information needs within this category also included dementia prognosis (6 studies, 37.5%) (7,31,35,39,41,43), current dementia medication (5 studies, 31.2%) (34,37,40,42,48), experimental drugs and clinical trials (4 studies, 25%), current research on dementia (3 studies, 18.7%) (36,37,46) and genetic aspects of dementia (2 studies, 12.5%) (37,48). The following information needs were mentioned only once (0.06%): negative impact of dementia on family and community (7), information specific to different stages of dementia (45), chance of recovery (7) and memory skills (37) ( Table 2).…”

“…General care included patient hygiene, food and nutritional information and best attitudes to adopt in caring. Ways to deal with the patient's behaviour (6 studies, 46.1%) was the second most commonly mentioned information need (32-34, 37, 38, 47), followed by safety issues (5 studies, 38.4%) (30,31,37,42,47). Safety issues encompassed information on how to improve the safety of the patient's home environment, how to keep patient safe and how to recognise fall risks and poor mobility.…”

“…Other reported information needs in this category were coping on with patient hallucinations (2 studies, 15.3%) (33,37), navigation of communication difficulties (2 studies, 15.3%) (37,48), activities for the patient (2 studies, 15.3%) (40,48), first aid and medical information (2 studies, 15.3%) (7,47) and emergency situations (2 studies, 15.3%) (30,45). Additional seven information needs were retrieved from only one study and these were: conflict resolution (42), patient ethics (42), helpful experiences of other caregivers (37), when to transfer the patient to the hospital (7), dealing with family and friends (48) and advocating for the patient (31).…”

“…geriatric hospitals and nursing homes), healthcare professionals skilled in dementia diagnosis and treatment, or support groups for caregivers. Other service-related information needs were financial help and services (5 studies, 33.3%) (30,41,42,44,46), legal issues (4 studies, 26.6%) (7,31,42,46), application for care programs (2 studies, 13.3%) (31,34), and insurance (2 studies, 13.3%) (40,46). As with the other main information themes, there were several information needs that were only stated once (0.07%).…”