Preferred type, timing and format of dementia information: A cross‐sectional survey of carers of people living with dementia

To clarify the unmet information needs of carers of people living with dementia, including the stage of their care journey at which topics become relevant, and the preferred format and mode of delivery of information.


| INTRODUCTION
In 2021, around 386,200 Australians were living with dementia, equivalent to approximately 15 per 1000 Australians. 1 An estimated 65% of these individuals live in the community, and 86% live with at least one other person. 2The number of people living with dementia in Australia is likely to more than double over the next 40 years. 1 Many of these people will progressively lose the ability to care for themselves, relying on the support of informal carers such as family and friends to remain in the community. 3,4n 2021, there were more than 337,000 people providing ongoing informal assistance to people living with dementia in the community. 1Over half of these unpaid, informal carers live with the person they care for, with 57% providing more than 60 h of care per week. 1 Over one third of people with dementia (36%) living in the community rely solely on this informal assistance.Having an informal carer, rather than care provided by a care service, has been found to reduce the risk of institutionalisation for people with dementia. 57][8] As dementia progresses, the level of assistance a person requires to care for themselves and perform activities of daily living typically increases. 10][11] The duration of caring and the patient's functional status, including behavioural problems and cognitive capacity, are the most significant predictors of carer burden. 11Other predictors of dementia carer burden include declining physical function, increasing behavioural impairment and mood disorders of the person with dementia, 8,12 dementia type, 13 and carers' social functioning and coping traits. 14ducation and provision of information is critical for improving the management of dementia and health outcomes of persons with dementia and their carers. 15nformation about dementia covers a range of topics, including diagnosis, progression and treatments, managing behavioural and psychological symptoms, managing physical and emotional impacts, legal and financial issues, and available and appropriate services. 16,17A recent systematic review highlighted a range of unmet information needs among people with dementia and their carers, particularly health-care services-related information. 17However, only one of the included studies reported Australian findings.The authors also emphasised the need to explore information needs at specific stages of dementia, as the severity of dementia influenced information needs.
Carers may obtain information from a variety of sources and in different formats. 17Many carers report challenges in accessing the information they need, as well as inadequacies in the information available. 17There are limited Australian data available regarding dementia carer preferences for information format and mode of delivery.This information can help guide development of future education and information programs. 17

| Aims
To clarify the unmet information needs of Australians providing support for a person living with dementia (henceforth referred to as 'carers' for brevity), including the stage of their care journey at which topics become relevant, and the preferred format and mode of information delivery.

| Design
A cross-sectional survey was conducted with carers of people living with dementia.

| Participants
Carers were defined as people who have a significant personal relationship with the person living with dementia and who provide a main source of emotional and practical support.Eligible carers were: aged 18 years or older; providing support to a person who had received a confirmed diagnosis of dementia from a medical professional; and able to read and write English.

Policy Impact
Carers of people with dementia had a strong desire for information on a wide range of topics relating to this condition.The topics changed as the dementia progressed.

Practice Impact
Information to support carers of people with dementia needs to be made available in a variety of formats to cater for differing ways in which information is consumed.

| Recruitment and data collection
Participants were recruited between March 2022 and October 2022 through a range of sources.Public and private geriatric hospital and community clinics, aged care providers and community dementia services located in New South Wales (NSW) audited their client lists to identify and invite potentially eligible carers to participate.Eligible carers were mailed, or handed, a study information pack, including a cover letter, information statement, hard copy of the survey and reply-paid envelope.Participants were invited to complete the survey and return it in the replypaid envelope.A reminder was sent to non-responders 4 weeks later.Additional recruitment took place via the online register StepUp for Dementia Research and dementia carer support groups located in NSW.StepUp for Dementia Research sent a nationwide invitation email to registered volunteers who met the eligibility criteria, including a brief study description and link to the online survey.StepUp for Dementia Research is funded by the Australian Government Department of Health and implemented by a dedicated team at the University of Sydney. 18oordinators of dementia carer support groups in NSW were contacted by email and asked to distribute the survey to their carer members.Coordinators chose to send an invitation email including a link to the online survey or provide study information packs, to their members.Reminders were not sent to registry or dementia carer support group participants, as the research team did not have their contact information.Consent was implied by return or completion of the survey online.

| Survey development
The survey included 64 items related to preferred type, timing, format and mode of delivery of information.Items were developed through an iterative process, including a comprehensive review of the literature to define concepts and identify previous survey items. 3,17,19,20From this, potential items were generated and then reviewed, by a panel including behavioural scientists, geriatricians, nurses and allied health professionals.The panel discussed each suggested item until consensus was reached.

| Information items
The survey (see Appendix S1) queried carers' need for information across five broad domains, including general dementia information (seven items), accessing support, health and aged care services (12 items), managing changes in behaviour/personality (eight items), managing physical and emotional health and well-being of person with dementia (seven items) and managing own health and well-being (seven items).For each item, carers were asked to indicate when in their carer journey they would like or have liked access to this information.For the first two domains (general dementia information; accessing support, health and aged care services), the four-point response scale included the options: 'when person first diagnosed'; 'within first year of diagnosis'; 'after first year of diagnosis'; and 'would not want this'.For the remaining domains, the four-point response options included: 'when person first diagnosed'; 'before this symptom first appears'; 'after this symptom first appears'; and 'would not want this'.Participants were asked to indicate the acceptability of modes of information delivery (seven items) and their access to facilities to participate in web-based care (four items).

| Sociodemographic characteristics
Carers were asked to self-report their sex, age, age of the person with dementia, type of dementia and time since diagnosis, language spoken at home, perceived severity of dementia (on a subjective scale of 1-10, with 1 indicating 'very mild' and 10 indicating 'severe'), comfort leaving person unaccompanied, relationship to the person with dementia and whether they live with the person with dementia.
The study received institutional ethics approval from Hunter New England Local Health District and the University of Newcastle Human Research Ethics Committees (HRECs; Approval numbers: 2020/ETH00403; 2019/ETH01074; H-2018-0308) and each participating site.Completion of the survey was taken as implied consent for all participants in this study.

| Statistical analysis
All statistical analyses were programmed using StataCorp 2015. 21Demographic, disease and information needs are reported as counts and proportions for categorical variables and mean and standard deviation for continuous variables.Each information item was ranked in descending order according to the proportion who endorsed it as information they wanted (i.e.participants responded either: 'when person first diagnosed'; 'within the first year of diagnosis/before this symptom first appears'; or 'after the first year of diagnosis/after this symptom first appears').The proportion of respondents selecting each of these three timing categories was also calculated for each item.

| Sample
A total of 163 carers returned a completed survey (20% response rate).Characteristics of the sample are shown in Table 1.The majority of carers were female (61%, n = 100) and the mean age was 68 years (SD = 11.8 years).Over half of carers were the partner of the person they support (52%, n = 84), and 36% were children of the person with dementia.Those supporting a partner living with dementia had a mean age of 76 years (SD = 7.6), those supporting a parent had a mean age of 58 years (SD = 7.0), and those supporting a sibling, friend or other person living with dementia had a mean age of 65 years (SD = 13.4).Carers were providing support to a person who had received a diagnosis of dementia an average of 5 years ago (range 1-14 years).Most carers reported the severity of symptoms in the person with dementia as moderate to severe (mean = 6.8;SD = 2.1).

| Most frequently reported information item
Table 2 presents the proportion of carers who wanted to receive each information item and the preferred timing of information provision.The majority of respondents (from 75% to 97%) indicated that they wanted information across each of the domains included in the survey.Almost all respondents (at least 97%) wanted general information about dementia, its symptoms and treatment.At least 55% of carers preferred this information at diagnosis.Some carers indicated they did not want information about possible life expectancy and the experiences of other carers (10% and 9% of carers, respectively).Information about accessing services and support was mostly preferred at or within the first year of diagnosis, apart from information about residential aged care and palliative care, which was preferred after the first year of diagnosis.A number of carers did not want to receive information about accessing services, including driving tests (25%) and palliative care (21% of carers).Preferences for the timing of information for managing changing behaviour and personality, changes in physical and emotional health and well-being and managing their own health varied, with carers split across wanting to receive this information at diagnosis, before symptoms first appear and after symptoms first appear.

| Preferred format and mode of delivery
Table 3 presents the preferences of carers for information format and mode of delivery.The greatest level of interest was for in-person face-to-face information provision (60% very interested), followed by written information (51% very interested), and face-to-face group information sessions (42% very interested).The least interest was shown for receiving information via online group sessions (33% not interested) and from a person over the Internet (e.g. via Zoom and social media; 29% not interested).Overall, 96% of carers had access to the Internet.Of these, the majority (89%) were either very or somewhat confident in using the Internet, and the majority (91%) had Internet access at home.Most carers reported access to a webcam and microphone (80%), 8% had neither, and 11% were unsure.

| DISCUSSION
This study is one of the first Australian studies to explore the type, timing and format of unmet information needs of carers of people living with dementia, highlighting topics about which carers did not or are not receiving adequate information.A sizeable proportion of carers (75-98%) reported wanting information across a broad range of topics.The preferred timing of information delivery varied according to the topic.This aligns with previous findings that a large proportion of carers reported that receiving information all at once following a diagnosis of dementia would be too overwhelming. 22Carers preferred general dementia information at diagnosis, information about accessing services at or within the first year of diagnosis, and information on managing symptoms as symptoms emerged.Carers were most interested in receiving information in-person face-to-face, via written format or from face-to-face group information sessions.Carers most frequently reported a desire for general information about dementia, including the types, symptoms, treatments and likely changes in symptoms over time.This information was preferred at the time of diagnosis by more than half of respondents.Despite evidence that carers rely on a variety of information sources, including health-care professionals and written and online information resources, carer information needs remain unmet. 17,20This may occur as a result of limited availability or access to information, or inadequacy of information provided. 17For instance, a systematic review on disclosing a diagnosis of dementia found only 34% of primary care physicians disclosed the diagnosis. 23Even when the diagnosis was disclosed, information about prognosis, treatments and management was not always provided, and information recall was often limited. 23ecommended strategies to improve recall and understanding of complex medical information include categorisation and prioritisation of information, using common and concrete terms rather than medical jargon, and presenting information in multiple formats. 24he majority of carers also prioritised information about where and how to access dementia-specific and aged care services (79-98%).Previous studies suggest that getting help with accessing or utilising formal care services represents a significant unmet carer need. 17,20Receipt of timely, tailored information regarding available services is linked to carer satisfaction and increased ability to access the right services at the right time. 6In this study, the preferred timing of information varied according to the type of service or support.For instance, carers preferred information about aged care services, My Aged Care and dementia-specific services and support groups at diagnosis, whereas information about respite, financial and legal assistance, residential aged care and palliative care was mostly preferred after the first year of diagnosis.Lack of awareness about the range of services available and the process for accessing services can limit access to services. 25Strategies such as psychoeducation interventions, dementia link workers or case managers have been recommended to support carers in navigating the dementia and aged care system. 25,26arers also reported a desire for information to support them in managing changes in the person with dementia's behaviour and personality, as well as physical and emotional health and well-being.The timing of information about these symptoms varied widely, with approximately one third wanting this information at diagnosis, a third prior to the symptom emerging and the remainder after the symptom emerged.This variation highlights the importance of regularly assessing information needs and having information in readily accessible formats so that carers can access it at a time and place convenient to them.Our findings also demonstrated that carers require information about how best to manage their own health and well-being.,28 Carers were strongly interested in attending information sessions, preferably face-to-face.Interest was greatest for individual sessions; however, there was also significant interest in face-to-face group sessions.There was also interest in written information and brief self-serve videos as modes of delivery.Mastwyk et al. 22 similarly reported a strong preference among carers for a written summary of information following a diagnosis of dementia. 22While online group sessions were the least popular option, this format was still of some interest to respondents.It is likely that due to the ongoing COVID-19 pandemic, carers have become more familiar with using online tools, such as Zoom.Virtually all respondents had access to the Internet; however, confidence varied.One fifth of respondents did not have appropriate equipment to be able to participate in online sessions.These findings underline the importance of health-care professionals (such as geriatricians and General Practitioners) and dedicated support services (such as Dementia Australia and aged care providers) having multiple formats available to deliver information, so carers can access the modes that best suit them.
T A B L E 2 Items endorsed by respondents as needing information (i.e.wanted) and preferred timing (n = 163).Our findings are consistent with previous studies, which found carers want adequate knowledge of dementia, disease progression, treatment prognosis and care requirements. 17,20,27,29Australian clinical practice dementia guidelines 16 recommend that written and verbal information is provided in a format and language accessible for people with any level of health literacy.Tailoring information to the preferences and needs of individuals can improve anxiety, recall, preparedness and satisfaction with care. 24This is likely particularly important for carers of people with dementia, given the progressive nature of dementia and its symptoms which often requires changing care and support.Our findings highlight also Note: Some items had missing data (% calculated using n = 163).

Preferred timing information
that information needs should be regularly re-assessed by the health-care professionals providing care for the person with dementia (including geriatricians and GPs), as carers report a preference for receiving different types of information at different times.Furthermore, some carers may not want to receive information about some topics, such as life expectancy or palliative care, reinforcing the need for information provision to be tailored to carer preferences and needs.The degree to which carer health and well-being is improved by the provision of information in a range of differing formats should be tested to further elucidate the most effective ways to meet carer information needs.Multicomponent interventions that incorporate education with therapeutic elements have been shown to be effective in improving the psychosocial well-being of carers. 29Many carers in the current sample lacked adequate equipment to enable them to access interactive online support.This needs to be taken into account in the design of information provision approaches for carers.

| Strengths and limitations
This is one of the first Australian studies to explore the preferred type and timing of information across a range of domains among carers of people with dementia.However, findings must be considered in light of a number of limitations.The response rate was low, limiting potential generalisability.The sample of carers had been providing care for an average of 5 years, so some carers may not have readily recalled their information needs in the immediate period following diagnosis.There was also a lack of input from carers into the development of the survey, meaning some unmet needs may not have been captured.The closed response options to the survey questions may also have led to some bias in participant responses.In addition, the vast majority of participants in the sample spoke English at home (94%).In contrast, 28% of people with dementia in Australia were born in a non-Englishspeaking country and are more likely to rely on informal carers than people from English-speaking countries. 30ith such low representation by carers from Culturally and Linguistically Diverse (CALD) backgrounds, findings may not be applicable to the CALD population of carers of people supporting someone living with dementia.Further research targeting this population's unmet informational needs is required.

| CONCLUSIONS
The need for timely, accessible and tailored dementia information that can assist carers to manage the symptoms of dementia and access services has been prioritised in the literature. 6Carers in this study desired information about dementia, its symptoms, treatment and trajectory, and how to access support services in the early phase of the condition.As dementia progressed, carers were more concerned about symptom management, palliative care and options for residential care.Future efforts should focus on developing and testing the acceptability, feasibility and effectiveness of interventions that deliver information and support via multiple formats, including in-person or group face-to-face, written and brief video formats, to carers of people living with dementia.
Sociodemographic characteristics of carers and persons with dementia they support (n = 163).
T A B L E 1