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

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.


| INTRODUCTION
Dementia is a progressive disease and consequently, people become increasingly dependent on support and care of others. Recent literature emphasizes the need for high-quality care for people with dementia and their informal caregivers as a means of maintaining or increasing quality of life and promoting the concept of living well with dementia. 1,2 This is in line with the World Health Organizations's global action plan on dementia, which states people should receive care aligned with their wishes and preferences. 3 Post-diagnostic support is defined as a system of holistic, integrated continuing care in the context of declining function and increasing needs of informal caregivers. 4 It is an important means to live well with dementia and covers a broad range of services and information that help people with dementia and informal caregivers, both immediately after diagnosis and going forward. Ideally, support is tailored, ongoing, and flexibly adapts to the changing needs as dementia progresses. 5 According to the National Health Service in the United Kingdom (UK), a goal of early support is providing information and support to access formal support soon after diagnosis. 6 Support soon after diagnosis is important, as informal caregivers who receive it will cope better over time compared to those that do not. 7 Early support can potentially increase people with dementia and informal caregivers' confidence in identifying and accessing community support. 8 However, as highlighted by the informal caregiver need paradox, when caregivers had little acceptance of their role as informal caregiver, they are not open to early support. 9 At the same time, informal caregivers retrospectively consider that early support tailored to personal needs would have been helpful in accepting dementia, thus highlighting its importance.
Despite its' importance, support often fails to adequately meet the needs of people with dementia and informal caregivers. 10,11 People with dementia report several unmet needs, including having sufficient daytime activities, support to address psychological distress and physical health issues. [12][13][14] Additionally, they lack information on dementia and feel emotionally overwhelmed. 15 Informal caregivers also reported a variety of needs including support to help them accept and adapt to their caregiving role. 16 Unsurprisingly, informal caregivers need support to maintain their own well-being. 12 People with dementia and informal caregivers prioritize different aspects of support. People with dementia prioritize support that maintains or improves quality of life, while informal caregivers prioritize support that helps people with dementia to maintain cognitive functions, their ability to perform activities of daily living and delay disease progression. 17 It is important to tailor support to wishes and needs of people with dementia and informal caregivers.
People with dementia and informal caregivers experience barriers when accessing early support straight after diagnosis 15 such as low health literacy, unfamiliarity with available support options or not knowing how to access them. [18][19][20][21] However, even when informal caregivers are familiar with available support, they are not always open to receiving it in the initial stage, because they feel support is not necessary yet, have difficulty describing their needs, or asking for help. 9,22 Despite the body of research, it remains unclear how support

| MATERIALS AND METHODS
This cross-sectional survey study among people with dementia and informal caregivers examines their experiences with support. The study is part of the international Co-Designing Dementia Diagnosis and Post-Diagnostic Support project, which focuses on improving support for people with dementia and informal caregivers.

| Participants
Participants were recruited in Australia, Canada (Ontario, Quebec and New Brunswick), the Netherlands, Poland, and the UK. Each country aimed to include 50 people with dementia and 50 informal caregivers. A broad range of recruitment strategies was used and is described in more detail in Appendix A. People with dementia were eligible if they had received a dementia diagnosis in the previous 24 months and could provide informed consent. Informal caregivers were eligible if they provided self-identified support to a person with dementia. People with dementia and informal caregivers did not have be a dyad to participate.

| Procedures
Each country obtained ethical approval. The study was executed according to the Helsinki Declaration. 23 Researchers provided potential participants with study information and they could be contacted in case of additional questions. Postal surveys obtained written informed consent before participation. In online surveys, participants provided written informed consent or ticked a box prior to starting the survey that acted as consent, this was dependent on the country's ethical requirements.
Data collection took place in 2020 (January-July). Surveys were anonymously completed on paper or online, depending on participant capabilities and preferences. People with dementia could be assisted by a family member or researcher if needed. Online surveys were distributed via online survey tools (Google Form, LimeSurvey, RedCAP, and Qualtrics); in accordance with ethical requirements in each country. Codebooks assisted with consistent data collection and analysis across countries.

| Surveys
The research team, including one person with dementia, identified important topics and developed two surveys-one for people with dementia and one for informal caregivers. The surveys took approximately 30 min to complete. Table 1 shows the topics. Each section included brief instructions on how to answer the items. Questions were single-choice questions and included an 'I don't know' option. In the surveys, the term 'care plan' was defined as 'a written plan about your health and social care needs relating to dementia, the treatments and services to meet those needs, and who is providing them'. The overarching term 'experiences with support' pertained to experiences and satisfaction with information and advice, health literacy and access to support, and confidence in their ability to live well with dementia.

| Statistical analysis
Statistical Package for the Social Science (SPSS) version 25 was used for statistical analyses. Each country combined online survey data with a pre-formatted SPSS file that contained manually entered data from postal surveys. The primary author merged data from all countries.
Descriptive statistics were applied to demographic characteristics, and experiences and satisfaction with support of people with dementia and informal caregivers. Percentages of strongly agree, neither disagree nor agree and strongly disagree were examined for HEVINK ET AL.
-3 of 10 statements regarding our three domains of support. Answer options 'not applicable' and 'I don't know' were excluded from the analysis as exact reasoning behind these options was unknown (participants did not receive this type of support, did not remember receiving it, or did not have an opinion). Appendix C provides an overview of excluded data. Chi-square tests compared people with dementia and informal caregivers on ordinal data on information and advice, access to support, and confidence in the ability to live well with dementia.
Additionally, Chi-square tests compared those people with dementia and informal caregivers who were satisfied with support with those who were not. Satisfaction with support was based on the question "Has the support after the diagnosis helped you deal more effectively with your concerns?", and was defined as the answers "Yes, it helped a great deal" and "Yes, it helped somewhat". If sample sizes were too small to justify Chi-square tests (expected count <5), descriptive statistics (% satisfaction) were used. Significance levels were set at 0.05.

| RESULTS
Ninety-one people with dementia completed the survey in Australia  Table 2 reports demographic characteristics of participants. Informal caregivers most often provided care to their parent (45%) or spouse (43%) and a substantial proportion (29%) experienced mental or physical difficulties. Some informal caregivers (11%) said they could not sustain the current level of care for more than 1 year.

| Overall satisfaction with support
Fifty-three people with dementia (69%) and 177 informal caregivers (67%) indicated that support after the dementia diagnosis helped them deal more efficiently with their concerns. Few people with dementia (22%) and informal caregivers (35%) indicated they received a care plan. People with dementia and informal caregivers did not significantly differ with respect to their overall satisfaction with support and having a care plan. Post-hoc analysis comparing people with young-onset dementia against those with late-onset dementia showed no significant difference in their respective experiences of support (Appendix D). Gender (% female) 54% 71%

| Satisfaction with information and advice
Cultural background (% Caucasian) 96% 94% Lives with informal caregiver/person with dementia (%) 66% 47% Has an informal caregiver/is the primary caregiver (%) 76% 83% T A B L E 1 Number of questions per section for survey for people with dementia and informal caregivers.

Sections in survey People with dementia Informal caregivers
Demographic characteristics 7 7 Experiences and satisfaction with the diagnostic process 12 11 Quality of life 1 1 Experiences and satisfaction with post-diagnostic support 9 16 Role as caregiver a -4

COVID-19 b 3 3
Open question 1 1 a Section only presented in informal caregiver survey. b Questions on the impact of COVID-19 were added shortly after data collection began. informal caregivers who said support was helpful were more often satisfied with the available information and advice.  A descriptive comparison revealed that people with dementia who find support helpful more often had confidence in their ability to handle future changes (53% vs. 13%). Informal caregivers who were satisfied with support did not significantly differ from those dissatisfied with support in confidence in their ability to live well with dementia.

| DISCUSSION
This study aimed to describe people with dementia and informal caregivers' experiences of support and compare their respective experiences. We highlight that although more than half of people with dementia and informal caregivers were satisfied with the support received, there still was a significant proportion who indicated they were not satisfied with support. This is consistent with how patients with other neurodegenerative and life-threatening diseases such as cancer, perceive support. 24,25 We demonstrate moderate satisfaction rates on dementiaspecific information for people with dementia and informal caregivers. Information is an important component of support and often the first support people access, these findings emphasize the need for improving information provision about dementia. Our findings are consistent with previous studies that showed people with dementia and informal caregivers perceive a lack of information upon diagnosis. 15,26 Information and advice about managing behavioural issues are important in addressing unmet informal caregiver needs; however, our findings highlight that the majority are not satisfied with this type of information. 27 These results support findings by Steiner, Pierce 28 whereby informal caregivers indicated needing information on dementia-related behavioural changes.
Our results suggest information is not readily accessible to people with dementia and informal caregivers as health literacy and information-seeking preferences may play a vital role in access to information. Informal caregivers preferably receive information from their healthcare professional who knows them and is familiar with their needs and preferences and often expect them to direct toward trustworthy and relevant information. 26 At the same time, informal F I G U R E 2 Experiences of people with dementia and informal caregivers with health literacy and access to support. Statements are reported as per informal caregiver survey. Some statements were presented to informal caregivers only.
caregivers perceive that healthcare providers sometimes lack dementia-specific knowledge, indicating that they are not the best accessible information source. 29 Additionally, informal caregivers report encountering several barriers when accessing information, such as not knowing where to find information or not being aware of the available information on support options. 18,20 Additionally, our findings indicate that people with dementia may have even more difficulty accessing information than informal caregivers. Most information sources target informal caregivers. 30 Our findings rein- force the notion that current information is not fulfiling people with dementia's need for easily accessible information. There is a need for enhancing the connection between healthcare providers and accessible information sources as well as designing information specifically for people with dementia.
Information and access to information are often seen as a harder to actively seek support due to fear of being stigmatized. 33 These findings suggest that people with dementia need to be empowered to ask for help and the provision of information on support should be tailored to people with dementia. However, more research is needed to elaborate on these initial findings.

F I G U R E 3
Confidence of people with dementia and informal caregivers in their ability to live well with dementia. Statements are reported as per informal caregiver survey. Some statements were presented to informal caregivers only.

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Compared to people with dementia, informal caregivers are less satisfied with information and advice and are less confident in their ability to live well with dementia. Additionally, informal caregivers' confidence in their ability to live well with dementia is not associated with overall support satisfaction. These results suggest that information and advice could serve as a means to further increases overall satisfaction with support for informal caregivers. Increased overall satisfaction with support has the potential to improve quality of life and decrease caregiver burden as this has been associated with fewer unmet needs. 34 Numerous studies have also underpinned the importance of information provision for informal caregivers. 27,35 Further studies should investigate whether there is a relationship between satisfaction with information and advice and informal caregivers' confidence in their ability to live well with dementia. This study encountered some limitations as COVID-19 impacted our study in several ways. Some countries had delays in securing ethical approval or trouble recruiting participants. In the UK, recruitment was completely paused for a while. Therefore, the number of people with dementia who participated was lower than initially expected. We were statistically unable to examine crosscountry differences and caution is advised in terms of generalizability of our findings, in particular those findings incorporating data from people with dementia. In addition, we planned to recruit an ethnically diverse sample. The majority of our sample had a Caucasian background as we were limited in our recruitment strategies due to COVID-19. Future research should take into account the recent recommendations on the inclusion of minority populations in dementia research by Brijnath, Croy. 38 A concise survey was created to minimize participant distress.
Potentially relevant information might not have been included such as dementia severity. We acknowledge support needs and thus experiences of support may change over time as dementia severity increases. 16 The inclusion criteria aimed to include people with mild to moderate dementia, but it cannot be guaranteed that all participants had mild to moderate dementia. Additionally, our analysis is unable to provide the strength of significant results. Future research should consider including dementia severity as a measure and the option of multivariate tests to provide detailed and in-depth information.
In summary, our findings imply that experiences of support for people with dementia and informal caregivers can be improved and that information should specifically address and distinguish between people with dementia and informal caregivers. Future research should focus on accessible online, evidence-based information that includes a range of strategies individuals can choose to adopt that can assist them to live positively with dementia and has the potential to improve quality of life. 39 Having this information available online is of particular value as Internet searches are already part of current information-seeking behaviour among people with dementia and informal caregivers. 40 It should take a positive approach to allow people with dementia and informal caregivers to improve their attitude toward a future with dementia.