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

Alzheimer’s caregivers seek social support through online communities to deal with their issues. The research team conducted a content analysis of ALZConnected.org to investigate the characteristics of information searched by caregivers and responses received. Two-hundred fifty posts and related responses were randomly selected and analyzed using a classification tool derived from the analysis of 500 posts and related responses spanning a yearlong period. The Linguistic Inquiry and Word Count (LIW C) generated an average tone rating of 25.94 for the posts and 52.69 for the responses. The findings highlighted the caregiver’s need for emotional support (59.6%), and confusion about Alzheimer’s symptoms (12%). Most responses suggested informational resources (40.16%) and advised to seek professional assistance (21.31%). One of the key needs identified to inform future design of an Alzheimer’s Caregiver Forum was a design sensitive to the capabilities of its elder user audience

Older persons’ and their caregivers’ perspectives and experiences of research participation with impaired decision-making capacity: A scoping review

Background and Objectives: Human research ethics statements support equitable inclusion of diverse groups. Yet older people are under-represented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Research Design and Methods: Scoping review of literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. Results: From 4171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods and foci, with hypothetical scenarios, quantitative analyses and examination of proxy consent predominating. Participants (n=7331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%) and older persons with dementia/cognitive impairment (6%). Synthesis identified two themes: willingness to participate and decision-making approaches. Discussion and Implications: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons’ and caregivers’ perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media

A Story to Tell among Minority Alzheimer\u27s Patient Caregivers: A Phenomenological Study

The level of burden experienced by caregivers of patients diagnosed with Alzheimer\u27s disease is high. Studies that examine this burden by taking into account cultural and spiritual differences are limited, particularly with regard to minority populations. The purpose of this study was to investigate the burden and challenges faced by minority caregivers providing in-home care to Alzheimer\u27s patients. Guided by social support theory, a phenomenological study design was used with semi-structured interviews of 12 caregivers to examine their perspectives on the burden and challenges they face, including their lived experiences, cultural and spiritual values, and interaction with health professionals. Thematic analysis in an inductive way was used to analyze the collected qualitative data. The results of the analyses of the collected data showed that cultural and spiritual values are important in making decisions, as caregivers in minority populations face daily challenges in terms of limited social support and resources. The findings of this study suggest that public health interventions aimed at alleviating the burden on Alzheimer\u27s caregivers need to take into account differences in cultural and spiritual values. Findings also show that there is a need for social support programs that reduce the burden on caregivers in general and on the minority population in particular. The findings of this study may drive positive social change by helping public health workers design and implement programs that consider differences in the cultural and spiritual values of minority populations while garnering the resources to provide the needed social support and alleviate the burden faced by the family member caregivers

Help-seeking for cognitive impairment by the patient : the role of self-compassion.

Older adults represent one of the fastest growing population groups with estimates predicting global growth from 617 million in 2015 to 1.6 billion in 2050. As the aged population increases, incidence of Alzheimer’s disease (AD) and other dementias will also increase. Professionals agree that early intervention is essential for therapeutic and quality of life purposes. However, many older adults wait several months or years to seek medical help after first noticing signs of cognitive impairment. The present study seeks to identify the predictors of help-seeking for cognitive impairment by an individual for him/herself and the role that self-compassion may play in this process. Using two approaches, the present study reveals that cognitive (i.e., symptom identification and disease attribution) and affective (i.e., symptom impact and threat appraisal) factors predict help-seeking intentions while also providing evidence that help-seeking intentions may be a separate construct from help-seeking behavior in the context of responding to signs of AD. Contrary to hypotheses, self-compassion did not function as a moderator of help-seeking intentions nor did it significantly predict help-seeking intentions beyond other variables. Consideration is given as to why self-compassion may not have functioned in this process as expected. Self-compassion may have a greater impact on help-seeking actions than the intentions that seem to have been measured by the present study. Recommendations are made for future research to further investigate patients’ help-seeking actions in response to signs of cognitive impairment and to clarify whether or not self-compassion plays a role

Forming Impressions on Computer-Mediated Healthcare Peer-Support Systems for Informal Caregivers

The rapid evolution of Information technology (IT) has seen its adoption during many aspects of our lives, including healthcare. Healthcare IT provides the public with access to governmental records, electronic health records, healthcare websites, internet-based medical consultation, and more recently, online peer-support portals. These peer-support portals, which are directed not only towards patients but also caregivers, have been found to be a source of informational and emotional support. In addition, for caregivers who cannot leave their loved ones to access in-person support groups, these online support portals are an important substitute. In these online peer-support portals, informal caregivers interact with one another, providing emotional and personal support, leading to a sense of camaraderie and thereby a social relationship. The contributions on these portals are voluntary, with some members contributing more often than others. The first study in this dissertation focuses on understanding the patterns of interaction between these top contributors, referred to here as peer patrons, and other informal caregivers in terms of the information they provide, and the unique characteristics of the top contributors based on these interactions. Several unique interaction patterns related to peer patrons were found along with information about how peer patrons contribute towards the coping mechanism of informal caregivers. Interface design implications based on these outcomes were discussed. With informal caregivers exchanging not only information and emotional content on online peer-support portals but also forming social relations, it is important to understand how these users form impressions of others based on the information they access. The possible consequences of following healthcare and medical advice posted on these portals further emphasize the need to understand how users form impressions of one another on these portals. The second study in this dissertation focuses on impression formation using profiles based on those of the peer patrons who were the focus of the previous study. This exploratory study brought to light the prominence of the comment content and the profile picture in forming impressions on these portals, thereby supporting literature regarding context effects on impression formation. The final chapter is an intervention-based study investigating factors leading to positive impression formation on online healthcare peer-support portals. It supported the findings from the previous study regarding the importance of comment and profile picture and suggested the use of other peer ratings to solidify impressions formed using the former two cues. Additionally, the contribution of this dissertation to the literature and the improvement of online healthcare peer-support portals is discussed

Examining the Lived Experience of Mild Cognitive Impairment: An Evidence-Based Practice Project

This Evidence-Based Practice (EBP) project addressed the following question: What are the perspectives, experiences, and self-reports of adult individuals, groups, or populations who have MCI or report problems with Functional Cognition (and / or their caregivers)

Factors related to the quality of life in family carers of people with dementia: a meta- analysis

Objectives: This meta-analysis aimed to (1) quantitatively synthesize evidence of factors related to the quality of life (QoL) of family carers of people with dementia and (2) explore moderating factors that may influence the strength of the relationship between such potential predictive factors and carer QoL.  Methods: Studies that investigated correlations between patient/carer factors and QoL in unpaid family carers of people with dementia and were published in English, Spanish, Portuguese, or Japanese were included.  Results: Thirty-three studies were identified. The pooled correlations with carer QoL (effect size) were significantly large for depression (−0.58), significantly moderate for subjective burden (−0.47), and significantly small for people with dementia’s neuropsychiatric symptoms (−0.24). These results indicated to be robust in the context of publication bias. The results of subgroup analyses demonstrated the social and economic development status of the country where study participants resided did not moderate these effects.  Conclusion: Carer depression, subjective burden, and people with dementia’s neuropsychiatric symptoms may play a critical role in maintaining QoL of family carers regardless of the social and economic circumstances

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

A Systematic Literature Review of Effective Interventions For African-American and Hispanic Alzheimer\u27s Caregivers

In this systematic review, an investigation of research on effective social work interventions for African-American and Hispanic caregivers of loved ones with Alzheimer\u27s disease (AD) was conducted. Through a comprehensive literature search, twelve articles met the set inclusion criteria. Peer-reviewed journal articles on quantitative or qualitative research studies on African-American and Hispanic AD caregivers served as the data source. The review found three categories of interventions: in-home programs, Cognitive Behavior Therapy (CBT) focused small groups, and support groups. The majority of the studies included a demonstrated effort to culturally tailor each intervention. The results of the review demonstrate an overall improvement in depression, diminished sense of burden, and other measures of healthy caregiver coping. The majority of the interventions demonstrated little difference between racial or ethnic groups, indicating that cultural tailoring is advantageous to creating effective AD caregiver interventions. Based on the findings, further research is needed to explore CBT\u27s efficacy for African-American caregivers and to assess interventions that address caregiver anxiety. Furthermore, this project indicates the ongoing need for social work practitioners to act with cultural sensitivity, curiosity, and responsiveness as a means for effective cross-cultural interventions

Logging in strained, logging out sustained: the utility of online support groups for caregivers of individuals with advanced-stage cancer

"The current investigation explored both the process and content of four separate online support groups run through CancerChatCanada, with a national sample of caregivers of individuals with advanced-stage cancers. A grounded theory analysis of the chat transcripts led to the generation of the core category, ""Logging In Strained, Logging Out Sustained"", which captures the essence of the group experience, and is characterized by the following main categories: (I) The Life of a Caregiver; (2) Group as Something to Look Forward to; and (3) Facilitator as Guarantor of Maximal Group Utility. Altogether, the findings that emerged from this study provide insight into the range and depth of the cancer caregiver experience, the meaning of online caregiver support groups to those who utilize them, and the various ways in which facilitators skillfully manage group sessions so to enhance their value.