Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences.

OBJECTIVES: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. METHOD: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. RESULTS: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. CONCLUSION: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.

Why to test for dementia: perspectives of patients, significant others and general practitioners.

BACKGROUND: This study aims to provide greater insight into the current decision-making process on diagnostic testing for dementia by exploring the expectations, needs and experiences of patients with memory complaints, significant others and general practitioners (GPs). METHODS: We performed semi-structured interviews with patients (>60 years) who consulted their GP on memory complaints, significant others and GPs. Participants were recruited until data saturation was reached in thematic analysis of interview transcripts. RESULTS: We performed 51 interviews (patients n = 20, significant others n = 15, GPs n = 16). Thematic analysis revealed four themes: (i) 'drivers to (not) testing', i.e. need to act on symptoms, beliefs on the necessity and expected outcomes of diagnostic testing; (ii) 'patient preferences and context are critical in the actual decision', i.e. in the actual decision-making process interpretation of symptoms, GPs' desire to meet patient preferences, social context and healthcare system dynamics guided the decision; (iii) 'need for individualised communication in the decision-making process', i.e. for patients feeling heard was a prerequisite for decision-making and GPs tailored communication strategies to individual patients and (iv) 'GP practice and barriers to shared decision-making (SDM)', i.e. although GPs value SDM in the decision on diagnostic testing for dementia, patients express limited awareness of the decision and options at stake. CONCLUSIONS: Decision-making on diagnostic testing for dementia is a multifactorial and preference-guided process for all involved stakeholders, but decisions are often not explicitly jointly made. Development of patient decision aids could facilitate better involvement and more informed choices by patients.

Overcoming the Digital Divide for Older Patients With Respiratory Disease: Focus Group Study.

BACKGROUND: The need for and adoption of eHealth programs are growing worldwide. However, access can be limited among patients with low socioeconomic backgrounds, often resulting in a so-called "digital divide" due to a mismatch between eHealth and target populations that can gain benefit. This digital divide can result in unsuccessful eHealth implementations, which is of critical importance to health care. OBJECTIVE: This study evaluated the opinions of elderly patients with asthma and chronic obstructive pulmonary disease (COPD) about an existing pharmacy-based personalized patient web portal that provides medication overview and information on associated diagnoses. The aim was to obtain insights on the common barriers of elderly people when using health-related websites, which can help to improve accessibility. METHODS: This was a cross-sectional qualitative study of a patient panel of the Groningen Research Institute for Asthma and COPD in primary care. Participants were required to be older than 55 years, be Dutch speaking, have no prior experience with the study website, and be diagnosed with a chronic respiratory illness. Two focus groups were created, and they completed a 45-minute session for testing the website and a 120-minute session for semistructured interviews. The focus group sessions were recorded, transcribed verbatim, and analyzed by content analysis. RESULTS: We enrolled 11 patients (9 women) with a mean age of 66 (SD 9) years. Of these, 5 had asthma, 3 had COPD, 2 had asthma-COPD overlap syndrome, and 1 had bronchiectasis. Participants were generally positive about the website, especially the areas providing disease-related information and the medication overview. They appreciated that the website would enable them to share this information with other health care providers. However, some difficulties were reported with navigation, such as opening a new tab, and others reported that the layout of the website was difficult either because of visual impairments or problems with navigation. It was also felt that monitoring would only be relevant if it is also checked by health care professionals as part of a treatment plan. Participants mentioned few privacy or safety concerns. CONCLUSIONS: It is feasible to develop websites for elderly patients; however, developers must take the specific needs and limitations of elderly people into account (eg, navigation problems, poor vision, or poor hand-eye coordination). The provision of information appears to be the most important aspect of the website, and as such, we should endeavor to ensure that the layout and navigation remain basic and accessible. Patients are only motivated to use self-management applications if they are an integrated part of their treatment. The usability of the website can be improved by including older people during development and by implementing design features that can improve accessibility in this group.

Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study.

OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.

Understanding patients' and significant others' preferences on starting a diagnostic trajectory for dementia: An integrative review.

OBJECTIVE: To explore the preferences of people with memory complaints (PwMC) and their significant others regarding starting a diagnostic trajectory for dementia. METHODS: A systematic literature search was conducted in PubMed, PsycINFO, CINAHL, Web of Science, and Embase. Selection of abstracts and papers was performed independently by two researchers. Methodological quality was assessed with the Mixed Method Appraisal Tool. Result sections of the selected papers were thematically synthesized. RESULTS: From 2497 citations, seven qualitative studies and two mixed methods studies published between 2010 and 2020 were included. Overall quality of the studies was high to moderate. A thematic synthesis showed that preferences for starting a diagnostic trajectory arose from the feeling of needing to do something about the symptoms, beliefs on the necessity and expected outcomes of starting a diagnostic trajectory. These views were influenced by normalization or validation of symptoms, the support or wishes of the social network, interactions with health care professionals, the health status of the PwMC, and societal factors such as stigma and socioeconomic status. CONCLUSION: A variety of considerations with regard to decision-making on starting a diagnostic trajectory for dementia were identified. This emphasizes the need to explore individual preferences to facilitate a timely dementia diagnosis.