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Realist Evaluation of the Dementia Literacy Toolkit Project

Dr Louise Horstmanshof

Associate Professor Sandra Grace

School of Health and Human Sciences

For The North Coast Primary Health Network (PHN)

With contributions from:

Ms Sharyn White & Ms Taya Prescott

March 2018

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Executive Summary

Introduction This project evaluated the Dementia Health Literacy Project using a realist evaluation framework. The Dementia Health Literacy Project set out to engage consumers to co-design health resources that would meet healthy literacy standards to increase their dementia health literacy.

Method Realist evaluation sets out to find out ‘what works for whom and in which contexts’ (Wong et al, 2012). It requires multiple perspectives from different levels of a system to identify the particular resources, opportunities or constraints, reasoning, or behaviours that produce particular outcomes. Such an approach helps us understand the contexts and mechanism that produce particular outcomes for consumers, members of the community and clinicians. Reports of project stages, survey results and transcripts of semi-structured interviews were analysed for patterns to identify the mechanisms (underlying causal processes) that can be changed so that the level of dementia health literacy could be improved.

Results The Dementia Health Literacy Project comprised a needs analysis, a co-design workshop, development of the Dementia Support Kit, and an evaluation of the Kit with a range of stakeholders. The Kit was developed using health literacy best practice, that is, it provided information that met health literacy standards, information that was available in a variety of ways, and was based on consumer involvement at all stages of its development. Feedback provided by members of the co-design groups, clinicians and service providers was very positive.

Conclusion Engaging consumers in the design of a health resource based on health literacy best practice is likely to empower consumers to manage their dementia, improve access to services and their capacity to make informed, shared decisions about their care. However, further investigation with those newly diagnosed with dementia and their carers is required before firm conclusions can be drawn. Engaging consumers in all stages of the project, ensuring that the health resource is based on locally-relevant information, having support from local health care and service providers and a flexible project team were identified as the underlying mechanisms that could influence the outcomes of the Project.

Recommendations Recommendations for a robust and usable health literacy process for developing consumer health resources:

Using a realist evaluation framework:

1. Identify the outcome/behaviours that you want to change (in this case, the process for developing health literacy resources that are robust, usable and sustainable)

a. Identify the need and purpose of the health resource (e.g. using an in-depth needs analysis).

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b. Engage groups of consumers and other key stakeholders (e.g. clinicians, clinical advisors) as early as possible to co-design the health resource and engage with the project.

c. Plan and budget for the resource to be sustainable and available in a variety of ways (e.g. printing, online hosting, design).

2. Gather data from all interventions (actions) involved in the project (e.g. literature review, reports about

workshops, interview data). Maximise the diversity of data (e.g. draw data from different sources and events) to strengthen the evaluation.

3. Analyse the data to identify the generative mechanisms, that is, the factors that caused/did not cause the

outcomes or behaviours to occur. Consider the influence of the specific contextual factors on outcomes or behaviours (‘for whom and in what circumstances did an outcome occur’). Generative mechanisms for developing health literacy resources could include:

a. Recruiting an appropriate target audience to obtain authentic feedback on the usefulness/effectiveness of the resource. In the case of the Dementia Health Literacy Project, the target audience would be those newly diagnosed with dementia and their carers and those clinicians and health service providers who have the opportunity to disseminate the resource.

b. Asking targeted questions that are likely to demonstrate the use and effectiveness of the resource. It may be more appropriate in some circumstances to seek the lived experience in place of, or in addition to, validated quantitative tools.

c. Establishing strong engagement with clinicians and other health service workers during the development of the resource to maximise its subsequent use.

Generative mechanisms can then be targeted to produce the desired outcomes or behaviours.

Recommendations and strategies to implement the toolkit on a wider geographical scale:

1. Incorporate plans for transferability into all stages of the project (planning, co-design, resource development, implementation and feedback, dissemination and sustainability).

2. Discuss future plans with key stakeholders from other regions in the initial stages of the project.

3. Identify aspects of the resource that may be transferrable to other regions/applications (e.g. information on specific health condition).

4. Negotiate for dedicated staff members to localise the health resource.

5. Disseminate widely using key stakeholders and their networks.

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Contents Executive Summary ............................................................................................................................................... 2

Introduction ....................................................................................................................................................... 2

Method .............................................................................................................................................................. 2

Results ............................................................................................................................................................... 2

Conclusion ......................................................................................................................................................... 2

Recommendations ............................................................................................................................................. 2

Introduction ........................................................................................................................................................... 6

Background ........................................................................................................................................................ 6

Realist evaluation framework ........................................................................................................................... 6

Method .................................................................................................................................................................. 7

Data collection ................................................................................................................................................... 7

Collation of relevant documents: .................................................................................................................. 7

Semi-structured interviews with key stakeholders ....................................................................................... 7

Data analysis ...................................................................................................................................................... 7

Ethics ............................................................................................................................................................. 8

Results ................................................................................................................................................................... 8

Contexts ............................................................................................................................................................. 8

Literature review ........................................................................................................................................... 9

Needs Analysis ............................................................................................................................................... 9

Co-design workshops ................................................................................................................................... 10

Pilot and feedback of the Tweed Dementia Support Kit ............................................................................. 10

Consumer feedback ..................................................................................................................................... 11

Key results of HLQ surveys …………………………………………………………………………………………………………………… 12

Mechanisms ..................................................................................................................................................... 12

Literature review ......................................................................................................................................... 12

Co-design workshops ................................................................................................................................... 12

Tweed Dementia Support Kit implementation and feedback ..................................................................... 12

Outcomes ........................................................................................................................................................ 13

Discussion ............................................................................................................................................................ 15

Successes of the Project .................................................................................................................................. 15

The research approach .................................................................................................................................... 16

Lessons learned from the Project .................................................................................................................... 16

Impact of the Project ....................................................................................................................................... 18

Conclusion ........................................................................................................................................................... 18

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Recommendations ............................................................................................................................................... 19

References ........................................................................................................................................................... 21

Appendix 1 Checklist for Consumer-Friendly Information .................................................................................. 22

Appendix 2: Needs Analysis – Summary ............................................................................................................. 24

Appendix 3: Dementia Health Literacy Clinician Feedback ................................................................................. 46

Appendix 4 The Ophelia Principles ...................................................................................................................... 55

Appendix 5: Health Literacy Questionnaire (pre- and post- use of the Tweed Dementia Support Kit) .............. 56

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Introduction

Background Dementia is a common, complex and disabling disease, and many people have early cognitive decline that is not recognised or diagnosed (Alzheimer’s Australia, 2017). There are more than 400,000 Australians living with dementia and this number is expected to increase by 90% over the next 20 years (Brown, Hansnata & La, 2017). The Tweed Shire has the highest prevalence of dementia in NSW and rates of dementia in the Tweed Shire are expected to grow between 97% and 122% by 2050 (Alzheimer’s Australia, 2016; Deloitte Access Economics, 2014).

Approximately 60% of the Australian adult population are at risk of low health literacy (Australian Commission on Safety and Quality in Health Care, 2014). Low health literacy is associated with poor advance care planning in dementia and poor health outcomes in general (Volandes et al., 2009; Volandes, 2008). Health literacy best practice comprises three main areas: (1) information that meets health literacy standards (see Appendix 1: Checklist for Consumer-friendly Information), (2) information that is available in a variety of ways, and (3) consumer involvement (Australian Commission on Safety and Quality in Health Care, 2014). Adopting health literacy best practice is essential to support people to make good decisions about their future, early in their disease journey. Using evidence-based health literacy strategies can support people with dementia and their families and carers to access, understand and act on the information and services they need (Sudore & Schillinger, 2009). People with dementia report receiving little or no information, or unclear printed information (Van der Roest et al., 2009). Health information should be tailored to meet the needs of people with low health literacy and delivered in a variety of ways to accommodate a variety of needs (Kobayashi et al, 2014). This includes clear written information, visual aids, video decision support tools and online or digital information (Hong & Cho, 2016; Volandes et al., 2009; Volandes et al., 2008). Partnerships with consumers, their family and carers have been shown to improve clinical quality and outcomes, people’s experience of care and the business and operations of delivering care (Australian Commission on Safety and Quality in Health Care, 2014).

It is clear that using health literacy best practice can help people with dementia, their families and carers to navigate the dementia journey and make informed choices about their future care. In particular, developing information that meets health literacy standards, that is available in a variety of accessible ways and is designed in partnership with consumers will result in better quality information that meets the needs of the community. The 2016 North Coast Primary Health Network’s (NCPHN) annual Needs Assessment found that access to local services and support was limited by consumers’ fragmented understanding of available resources. In particular, commissioned dementia services were required in the Tweed area. Consequently, service mapping and health literacy were prioritised and the Dementia Health Literacy Project was commissioned.

Realist evaluation framework Realist evaluation is a way to understand how programs work. There is an underlying assumption that no program works for everyone all the time and that the context in which the program occurs influences its outcome (Westhorp, 2014). It aims to investigate how and why an intervention works, for whom, to what extent, in which respects, in what circumstances and over what duration? (Wong et al, 2012). That is, it aims to understand the underlying causal processes or mechanisms that generate particular behaviours and how people adapt to them. This is achieved by distinguishing salient contexts that are more or less conducive to producing the types of behaviours or adaptations of interest (outcomes). Outcomes include short, medium and long term changes, both intended and unintended, that arise from an intervention (Westhorp, 2014). This research evaluated the Tweed Dementia Health Literacy Project using a realist evaluation framework. Realist

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evaluation requires multiple perspectives from different levels of a system to identify the particular resources, opportunities or constraints, reasoning, or behaviour that produce particular outcomes. Such an approach helps us understand the contexts and mechanisms that produce particular outcomes for consumers.

Method Realist evaluation begins with an hypothesis that can be generated from a number of sources, including literature reviews and data from large scale surveys. In this study a literature review was used to identify ‘footprints’ or ‘signatures’ in the data which generated the following hypothesis:

Engaging consumers to co-design health resources that meet health literacy standards increases health literacy, meets community needs and empowers people to feel in control of their health, to access health services and to make informed, shared decisions about their care.

Data collection In realist evaluation, no strategy is ruled out to test the hypothesis. In fact, the accumulation produced by different methods can strengthen the results. Two data collection strategies were used in this study:

Collation of relevant documents:

• Health literacy literature review

• Needs Assessment survey data

• The Senior Project Officer’s Project Summary

• Tweed Dementia Support Kit

• Dementia Health Literacy Clinician Feedback survey

• HLQ pre- and post- use of the Tweed Dementia Support Kit

• Health Literacy Project Officer’s report on HLQ and use of the Tweed Dementia Support Kit

• Emails and meeting notes between the Health Literacy Project Officer and the research team

Semi-structured interviews with key stakeholders

• Interviews with three participants of the co-design workshops

• Senior Project Officer and Health Literacy Project Officer

• Research assistant

• Interviews with those who reviewed the Tweed Dementia Support Kit

Data analysis Interviews were recorded and transcribed verbatim with participants’ consent. Transcripts and documents were analysed using an approach adapted from the Scanning, Analysis, Response, Assessment (SARA) approach (see Figure 1) (Forrest et al., 2005). The SARA approach requires a continual cycle of assessment to determine if the response is effective. In this way, responses can be modified as required.

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Figure 1: The Scanning, Analysis, Response and Assessment (SARA) data analysis approach (Forrest et al., 2005)

Scanning identify behaviour patterns in the context of the identified problem

Analysis

describe the mechanisms that generate that behaviour in the context of the identified problem

Response

describe the decisions that altered the mechanisms producing the problem behaviour/state of affairs

Assessment

did the intervention work as intended (process and outcomes)

Ethics This evaluation was approved by the Southern Cross University Human Research Ethics Committee (Approval number: ECN-17-064).

Results

Contexts In realist evaluation interventions are actions or events that are introduced into existing social systems to bring about change. The outcomes of those interventions are dependent on the context in which they apply. Context could include the cultural, historical and political backgrounds that can influence an outcome (Pawson & Tilley, 2004). One of the contextual elements of the Project was its requirement to be conducted within resource constraints. Available funding and time for the Project influenced its outcomes. For example, the Senior Project Officer’s contract expired in August before the Project completion date. Her contract was extended to ensure completion of her part of the Project. Her comprehensive report showed her significant contribution to the Project.

Another contextual element was that the Senior Project Officer was very familiar with the local dementia service environment and could anticipate potential problems and find ways to avoid or overcome them. The Senior Project Officer and the Health Literacy Project Officer met on many occasions to find solutions to actual and potential problems. For example, one issue that was discussed was the requirement for a My Aged Care assessment and referral for access to many aged care services. The feedback from members of the co-design group and other members of the community was that the My Aged Care website was difficult to navigate. Consequently, the Project Officers added an easy-to-use visual guide to My Aged Care at the beginning of the Kit, and noted throughout the Kit where a My Aged Care referral was needed.

The Project was reportedly conducted in an environment of good will and persistence. Everyone who worked on the Project felt passionate about providing services that would provide the best outcomes for people with dementia, their family and carers. This contributed to their willingness to negotiate and to value others’ opinions and to be flexible in their approach.

The interventions and particular contexts of this Project are described below:

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Literature review A pre-existing health literacy literature review was updated using NCPHN and Australian Bureau of Statistics data and relevant literature retrieved using Google scholar and search term ‘dementia health literacy’. All papers since 2010 were reviewed by abstract and relevant full text papers were reviewed. The literature review highlighted the need to improve dementia health literacy in the Tweed, the importance of developing resources for this specific target based on health literacy best practice, and the importance of co-designing resources with the community they are intended to support.

Needs Analysis The 2016 NCPHN’s annual Needs Assessment indicated a need to commission service for dementia in the Tweed region. An industry specific focus group was then formed which included nurse practitioners from both mid-north coast and northern NSW, a clinical advisor and other local dementia service providers. The group advised that the service landscape was crowded and that there was a fragmented understanding of locally available dementia services. This impacted on the ability of local services to work together in a systematic and coordinated way. The advisory group identified that those who access services do so late in their disease trajectory, when cognitive impairment is already making it difficult to make informed decisions about proactive planning and self-management.

The Dementia Health Literacy Project was run concurrently with a Dementia Service mapping project that informed the health literacy work. Project Officers mapped dementia related services from the mid to the far north coast and this information was used to update the service listings in the National Health Services Directory.

A survey was developed and distributed through a wide community network including the Tweed Dementia Pathways Forum meeting group, Alzheimer’s Younger Onset Keyworker Program, Dementia Outreach Service and associated Café Connections consumer groups, Lifebridge, Byron Shire Respite Service and the Commonwealth Carelink and Respite service via mail to carers. Participants were asked:

• Who had made their diagnosis of dementia

• Their main concerns following diagnosis of dementia

• Whether they had received enough information about dementia from their doctors at the time of diagnosis

• Whether they had received enough information about local services and supports following diagnosis

• What further information they would have liked regarding dementia, services and support

• Whether the information they received was easy to read and understand

• Where they found additional information

• Which type or what information was the most helpful and why

• Their current knowledge of local services.

Fifty surveys were returned by post and two via Survey Monkey. Key results of the needs assessment included (see Appendix 2):

• 41% of respondents indicated that they received some information about dementia when they saw their doctor

• 37% indicated that they did not receive sufficient information about dementia at that time

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• 49% of respondents received some information about dementia-related services and supports; 39% did not receive sufficient information about services and supports

• 90.2% of respondents sought additional information through the internet and printed information

Co-design workshops Clinician feedback for the initial development of resources was sought through EOIs to Clinical Council and in the NCPHN Practitioner newsletter, direct emails to eight Tweed Valley area GPs and specialists, and verbal feedback from two NCPHN clinical advisors. Other clinicians provided discussion and feedback to inform resource design through the Tweed Dementia Pathways Forum, and via meetings with Alzheimer’s Australia, Dementia Outreach Service, Clinical Nurse Consultant and the Nurse Practitioner Tweed Heads.

The Senior Project Officer (NCPHN) and the Health Literacy Project Officer (NNSWLHD and NCPHN) facilitated two co-design workshops on 5 June and 5 July 2017. Invitations were sent to those who indicated their interest through the consumer surveys described above and Café Connections social groups (Dementia Outreach Service). The Co-design workshops also included Tweed Valley Council staff, NCPHN Service Mapping project staff and Dementia Outreach Service workers. The agenda for the workshops was to discuss the preferred format of the Tweed Dementia Support Kit, including size, length, binding and useability, the name of the resources, the layout of the resources and their content, including subjects, headings and important contacts.

Key outcomes from the co-design workshops included:

• recommendations for a DL size fridge magnet be produced (with important 24 hour contact numbers) with additional room for personal contacts/information

• recommendations for a large A4 size book with spiral binding for ease of handling, and large print and format for easy reading.

• ensuring that the Tweed Dementia Support Kit meets health literacy best practice as highlighted in the literature review (see Appendix 1).

Pilot and feedback of the Tweed Dementia Support Kit GP and other health professional feedback

• Copies of the Kit were distributed to clinicians and services who provide support to early dementia diagnosis clients for feedback. In mid July 2017 feedback was received from GPs and other health professionals through the Ballina Byron Clinical Society event on 20 July, 2017 and the North Coast Aged Care Symposium on 21 July, 2017.

• Feedback from a Dementia Clinical Nurse Consultant for the Tweed Valley indicated that the Kit was a valuable resource for those with early stage cognitive changes or diagnosis of mild cognitive change, as services and supports were available for them.

• Clinicians’ survey responses were positive about the hard copy resource, in particular that it provided valuable and easily accessible information for consumers with a diagnosis of dementia:

• 100% of clinicians who reviewed the Tweed Dementia Support Kit found it easy to read and understand

• 92% of respondents thought that the Tweed Dementia Support Kit would be beneficial for their clients’ knowledge of services and support.

• 71% of respondents said that they would definitely give a hard copy of this Kit to their clients.

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• 35% said that they were very likely to print a copy of the Kit for their clients; 35% said that they would definitely print a copy for their clients.

Results of the clinician feedback survey form Appendix 3.

Consumer feedback The Health Literacy Questionnaire (HLQ), developed by Deakin University (Osborne et al., 2013), was selected as a validated health literacy tool that could be used to assess change in health literacy following use of the Tweed Dementia Support Kit. The HLQ is part of the wider Ophelia approach (Deakin University, 2017) (see Appendix 4) but used in this Project as an evaluation tool rather than a needs assessment. Six extra questions were added to the HLQ to provide specific feedback about the Kit:

1. Do you find this Kit easy to read?

2. Is this information in this Kit easy to understand?

3. What is the main message of the Kit?

4. Does the information in the Kit increase your knowledge of dementia-related services and support?

5. How likely are you to contact any of the phone numbers in this book?

6. How likely are you to look up any of the online links in the book?

Consumer feedback from members of the original consumer Co-design Workshop was very positive. Typical comments included:

It will be my ‘go to’ for information.

Everything I need in one place.

Excellent lay-out.

The Health Literacy Project Officer sought out existing seniors’ groups via the Tweed Council website. She contacted some of these groups and attended their meetings to introduce the Tweed Dementia Support Kit and invite participants to evaluate the Kits:

Members of the first group, the Mudgeeraba Cedar Cutters Day Club, were invited to complete the HLQ at the beginning of the session. This was followed by an introduction to the Dementia Health Literacy Project and the Tweed Dementia Support Kit. Members were invited to take a copy of the Tweed Dementia Support Kit and to provide feedback via completing the HLQ again along with six extra questions to gather specific information about the Kit. According to the Health Literacy Project Officer group members did not understand the relevance of the Tweed Dementia Support Kit to them because they had been asked to complete the HLQ first without providing the context of the Project. As the Project Officer said, ‘Trying to do it really scientifically just didn’t work’. They also found the survey too long. Only a small number of members took up the option to review the Tweed Dementia Support Kit.

At the second and third groups Sixty and Better, Elanora, and Dementia Carers Support Group information about the Dementia Health Literacy Project was presented first before the HLQ was issued. Both groups were very receptive to the information. Tweed Dementia Support Kits, the HLQ with six extra questions and reply paid envelopes were issued.

A total of 24 people completed the initial survey about their health literacy. All participants were issued with the Kit and contacted within 1-4 weeks. The second round of surveys was conducted by telephone or email. A total of 13 follow-up phone calls or emails were made. Many group members did not remember receiving the Tweed Dementia Support Kit.

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Key results of HLQ surveys Having a single resource with emphasis on local services and supports was considered valuable by consumers. In the current climate of service centralisation, a local resource with local services gave consumers a sense of connection to the local support services.

The HLQ comprised nine domains of health literacy:

Domain 1: Health care provider support Domain 2: Having sufficient information to manage my health Domain 3: Actively managing my health Domain 4: Social support for health Domain 5: Appraisal of health information Domain 6: Ability to actively engage with health care providers Domain 7: Navigating the health system Domain 8: Ability to find good health information Domain 9: Understand health information well enough to know what to do

In Domains 2, 4, 6, 7, 8 and 9 scores increased after using the Tweed Dementia Support Kit (see Appendix 5).

Mechanisms Mechanisms are underlying causal processes, that is, the reasoning of protagonists that prompts the response. Mechanisms in this Project include:

Literature review The literature review built on the understandings and experience of the Health Literacy Project Officer who had already been working in this area. A co-design approach was considered essential for all stages of the Project: the needs analysis, co-design workshops, the way the graphic designer was engaged, and feedback of the Kit. The literature review also revealed the Tweed region as a dementia hot spot. The Project needed to be location-specific and involve people with dementia, their carers, and the health services that provide for them.

Co-design workshops Co-design workshops enabled close engagement with the consumers, carers and health professionals. Co-design teams were given brochures, flyers and magnets of different sizes, shapes and colours to prompt their thinking. In response to feedback from the co-design workshops the Project team’s plans for the layout of the resource changed from a fridge magnet with flip pages to an A4 booklet with large print. The team had not anticipated the preferred size of the resource. Consumers thought that an A4 book was less likely to get lost. It could be easily stored on a shelf. A small fridge magnet meant that important numbers could be readily accessed. Consumers also wanted a pocket on the inside cover of the book but it was beyond the limits of the budget. The Project team compromised to provide a final product that satisfied most of the recommendations.

Tweed Dementia Support Kit implementation and feedback GPs and other health care and service providers are likely to have a strong influence on the uptake of the Kit. Their recognition of the value of the Kit and their willingness to distribute it, print it or otherwise direct people to it is key to the success of the Project. Only one GP responded to the clinician survey. Further investigation is required to understand why only 71% of respondents to the clinicians’ survey said that they would definitely give a hard copy of this Kit to their clients; 35% said that they were very likely to print a copy of the Kit for their clients; 35% said that they would definitely print a copy for their client.

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After meeting the first group of consumers the Health Literacy Project Officer changed her approach to one that was more appropriate for the target groups. Issuing the survey before introducing the Kit and presenting its purposes left many participants unsure why they were being asked to complete the survey. It also became apparent on follow-up that not everyone had taken the Tweed Dementia Support Kit to review. Some had considered it not relevant to them (e.g. covering an area where they did not live); some took the Kit but had not looked at it by the time of the follow-up phone call or email. Further piloting is needed to confirm the trends indicated by the surveys.

The HLQ was too long for some members of the consumer group. Some participants found it confusing and had difficulty distinguishing between similar questions. However, it did produce good information about the health information needs of those who completed it.

Outcomes Outcomes are the state of affairs or behaviours (intended and unintended) that change as a result of the interventions. The following outcomes were produced by the Needs Analysis, co-design workshop and evaluation of the Kit:

• An A4 Tweed Dementia Support Kit with large print was produced using health literacy best practice. The information it contained and its format (e.g. use of plain language and use of large font size) met health literacy standards. The information was available in a variety of ways (a printed book, a fridge magnet and online), and consumers were involved at every stage of its development.

• One unexpected consequence of the Project was that participating in the co-design workshop and in follow-up phone calls after using the Kit provided an opportunity to connect. Participants appreciated having their opinions heard and valued.

• Those who reviewed the Tweed Dementia Support Kit were generally very positive about it. To maximise its usefulness it needs to be provided where it is likely to be most needed, namely to those who are diagnosing dementia and to those who work in dementia services. If appropriate to the target group (i.e. those newly diagnosed with dementia and who reside in the region for which the Dementia Support Kit has been designed), it is likely to be very effective in increasing health literacy.

• Further opportunities to use and evaluate the Tweed Dementia Support Kit are needed to confirm its effectiveness in empowering people to feel in control of their health and to make informed, shared decisions about their care, and in improving access to health services. During follow-up phone calls it became evident that not everyone had used the Kit or could not recall using it.

• Despite producing some useful data, the HLQ may not be the most appropriate evaluation tool for this target group. Some participants found it too long. Others found some questions to be similar and therefore confusing.

• The results of this Project were used to support other projects. Responses were pooled with HLQ data from a concurrent project to reach a threshold of 50 responses. This collated data showed strong correlations between domains of health literacy. For example, those who could navigate the system well also felt that they could find health information well. These findings will inform future development of health information and resources.

Table 1 summarises the resources, opportunities or constraints that were provided and to whom they were provided (contexts), the ‘reasoning’ that was prompted in response (mechanism), and the changes in behaviour that were generated (outcomes).

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Table 1: The Dementia Health Literacy Project: Contexts, Mechanisms and Outcomes

CONTEXTS MECHANISM OUTCOME What resources, opportunities, constraints were provided and by whom? For whom and in what circumstances?

What reasoning was prompted in response?

What changes in behaviour/state of affairs were generated?

Literature review conducted by the Health Literacy Project Officer

Best practice health literacy guidelines identified and implemented throughout whole Project Focus on Tweed region as dementia ‘hot spot’

Needs analysis, co-design workshops, pilot and evaluation conducted so as to align with best practice guidelines. Pilot located in Tweed region

Needs Analysis conducted annually by NCPHN

Identified the dementia information available to consumers, gaps in the information, and issues of importance to people with dementia (e.g. continuing to be independent). Focus on Tweed ‘hot spot’.

Identified information to present at co-design workshops; factors to be considered in the design of the Kit; informed designation of ‘chapters’ in the Tweed Dementia Support Kit.

Co-design workshops, organised and facilitated by the Health Literacy Project Officer and the Senior Project Officer

Project team’s plans changed from fridge magnet with flip pages to an A4 booklet with large print in colour and a small fridge magnet. Project team can’t assume they know what consumers’ want. Co-design approach meant that people felt that they had the health information they needed. The process for developing resources will be used again.

Produced A4 booklet and small fridge magnet. Over-budget but needed to value participants’ wishes as far as possible. Co-design process may be most efficient when a draft is developed beforehand so that participants can make meaningful comments within the timeframe.

Tweed Dementia Support Kit finalised and issued for review by the Health Literacy Project Officer

High level of interaction with graphic designer cost a lot. Concise briefings with graphic designer required.

Revised budget

Kit distributed to GPs and other health care and service providers

Optimising the willingness of clinicians and service providers to distribute the Kit to those newly diagnosed with dementia and their carers (or otherwise direct them to it) is a key strategy for the success of the Project. Printing the Kit in black and white appears to be a barrier.

Strong (92% of respondents) recognition of the benefit of the Kit for their clients’ knowledge of services and support; 71% said that they would definitely give a hard copy of this Kit to their clients. Further investigation is required to ensure that reservations about the use of the Kit can be fully understood and addressed.

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HLQ distributed before use of the Kit by the Health Literacy Project Officer

Project Officer has to be flexible with this target group and ready to adapt pre-planned protocols if required. Strictly scientific method may need to be adapted to suit the target group. The validated survey was too long for some members of the target group.

Low response rate meant limited data. Results helped inform future projects. Changed procedure so that Project was introduced before pre-survey and Tweed Dementia Support Kit were issued. Limited data available for evaluation.

HLQ and six extra questions distributed 1 – 4 weeks after Tweed Dementia Support Kit issued

Further pilots are needed to confirm results.

Resource constraints prohibited further evaluation. Larger numbers are needed to confirm results.

Discussion

Successes of the Project This Project set out to test the hypothesis that:

Engaging consumers to co-design health resources that meet health literacy standards increases health literacy, meets community needs and empowers people to feel in control of their health, access health services and make informed, shared decisions about their care.

Feedback from those who reviewed the Kit was very positive but further investigation is needed to confirm the Kit’s ability to satisfy all elements of the hypothesis. For example, a larger sample and one with a target audience of those newly diagnosed with dementia is required to confirm the effectiveness of the Kit in empowering people to make informed shared decisions about their care. This evaluation suggests that the Kit is likely to empower consumers to better manage their dementia by providing easy access to a consumer-friendly resource that contains the region-specific information that they need.

Achievement of proposed outcomes of the Dementia Health Literacy Project are summarised in Table 2.

Table 2: Achievements of Proposed Project Outcomes

Proposed outcome Achieved

1. Identify local dementia resources in the Tweed Yes 2. Develop and implement a comprehensive Tweed Dementia Support Kit of resources to guide the newly diagnosed person living with dementia in

Yes Further piloting (e.g. with GPs and people

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the Tweed Heads region. This Tweed Dementia Support Kit was developed according to health literacy best practice.

newly diagnosed with dementia and their carers) needed to

confirm effectiveness 3. Provide recommendations and strategies to implement the Tweed Dementia Support Kit on a wider geographical scale.

Yes

4. Disseminate the Tweed Dementia Support Kit via a publication in a peer-reviewed journal and/or presentation at a relevant conference.

The Tweed Dementia Support Kit has been presented at two conferences. A peer-reviewed publication is planned 2018.

The research approach The interventions used in this Project comprised a needs analysis, a co-design workshop and an

evaluation of the Kit confirmed the real benefits of consumer engagement at every stage of the Project. The co-design groups were very successful. Not only did they ensure the impact of the final product but they also had the unintended consequence of making participants feel valued.

A small number of consumer responses about the effectiveness of the Kit were available for analysis. Further investigation is needed to confirm the results.

Further investigation of clinician and health service providers’ feedback is required. Although 91% of respondents to the clinicians’ survey recognised the benefit of the Kit for their clients, only 71% committed to giving a hard copy of this Kit to their clients. Understanding clinicians’ and health service providers’ reservations will help maximise the uptake of the Kit.

The change of staff during the Project had the potential to disrupt the Project. However, very good handover minimised the potential disruption. Budget and time limitations limited the extent to which the effectiveness of the Kit could be investigated.

The Health Literacy Project Officer’s previous design experience was very beneficial for the Project. Having successfully completed this Project, that experience has been extended so that the Health Literacy Project Officer will be better informed about the design, timeline and costs of resources in the future.

Ethics approval for the Project was obtained from the Human Ethics Committee of Southern Cross University to allow for dissemination of the findings more broadly.

Lessons learned from the Project This evaluation was strengthened by the diversity of sources of information that were available, including feedback from diverse groups of people who developed and then provide feedback for a Tweed Dementia Support Kit and feedback from the Project Team. The Project provided a resource that was intended to influence the target group’s decision-making. The support of GPs and other health and service providers is key to the success of the Project. However, it is the target person’s decisions that determine whether the desired

17

outcome is achieved, that is, the interaction between what the Project provides and the reasoning of its intended target population that causes the outcomes. This interaction, therefore, constitutes a program mechanism. Four key mechanisms were identified as responsible for changing behaviours and the state of affairs were:

• Strong consumer-engagement at all levels of the Project

• Using location-specific information (gaps identified in the Needs Analysis)

• Support of GPs and other health and service provides who work with people newly diagnosed with dementia and their carers

• Having a flexible project team who were willing to adapt to consumers’ needs and preferences (e.g. Tweed Dementia Support Kit format, method of distributing HLQs)

The research team’s reflections on lessons learned from the Project included:

• Research projects that involve people with dementia and/or carers need to take their special needs into account (e.g. availability, co-morbidities).

• An unintended benefit of this Project was the opportunity for one-on-one connected conversations with participants.

• Feedback about the usefulness of the Tweed Dementia Support Kit may be best sought from people in the Tweed region who are newly diagnosed with dementia, as well as from health professionals who make the diagnosis. The evaluation of the Kit may have been limited by the use of community groups and organisations that had no specific focus on dementia.

• Where possible, allow sufficient time between the first and second rounds of the HLQ. Some participants only had one week to review the Tweed Dementia Support Kit. For some participants this was too short a time to provide meaningful answers to some of the questions. For example, Question 2: ‘I have at least one health care provider who knows me well’ was unlikely to change over the short time between administration of the two HLQs. However, in this case, the focus of the survey was on improved access to the health information after using the Kit.

• The co-design process may be most efficient when a draft is already developed rather than starting from scratch. The co-design groups were presented with a range of potential designs of different sizes and shapes to facilitate the discussion.

• The HLQ may not have been the most appropriate measure to test the level of enhanced understanding about dementia and the local services that are available to support people with dementia and their carers. It is a long survey, containing 23 questions. Some questions were perceived as similar by participants. For example, participants may not have easily understood the difference between Question 4: ‘Feel able to discuss your health care concerns with a health care provider’ and Question 20: ‘Ask health care providers questions to get the information you need’.

• Building relationships with GP Practice Nurses who can inform GPs and other medical specialists, appropriate organisations, services and consumer groups may be an effective way of informing the dementia and wider community about this resource.

18

Impact of the Project • The impact of the Tweed Dementia Support Kit is likely to be high. Further investigation is required to

fully assess the impact of the Kit. However, a co-designed Kit that meets health literacy standards is likely to empower people to feel in control of their health, to access health services and to make informed, shared decisions about their care.

• The Health Literacy Project Officer was able to develop new relationships and re-established some pre-existing ones with a large number of stakeholders in the aged care and dementia sectors in the Tweed Valley region. These relationships facilitated access to targeted consumers for focus groups and feedback on the resource.

• A sound dissemination plan was established at the commencement of the Project to ensure the impact of the resource:

o The Health Literacy Project Officer and Health Pathways staff provided a link for clinicians to access the final version of the Kit on Health Pathways and on patient page of Health pathways.

o A link to Kit has been embedded on the NCPHN website for the wider community, including a widget to National Health Services Directory. NCPHN websites are currently being upgraded and the Health Literacy Officer will oversee this translation in future.

o A communications plan has being formulated by the NCPHN Senior Project Officer - Primary Health Care to distribute Kits to clinicians and service providers.

o The localisation, production and distribution of future Kits will be overseen by the Senior Project Officer - Primary Health Care NCPHN with support from the Health Literacy Project Officer. Four further versions are currently in development for Northern Rivers, Clarence Valley, Coffs Harbour and Port Macquarie regions. All will be available electronically on NCPHN website and Health Pathways.

o A Delirium Action Plan was formulated in conjunction with Ballina NCPHN Clinical Advisor and the Health Literacy Project Officer for inclusion in the Tweed Dementia Support Kit of resources and Winter Strategy programme. The Dementia Action Group (Kingscliff) was consulted on the plan.

• Sustainability of any hard copy resource containing contact details of local services is limited. Dementia

Support Kits for the Tweed and other regions will require annual review of the listed services to maintain currency. Websites of organisations/services need to be checked for accuracy.

Conclusion The Tweed Dementia Support Kit that was developed using health literacy best practice is likely to have the capacity to empower consumers to feel in control of their health, to access health services and to make informed, shared decisions about their care.

Four mechanisms were identified as key to producing change:

• Ensuring that consumers are engaged in every stage of the Project

• Providing location-specific information that closely meets the needs of consumers

19

• Maximising the support of clinicians and health service providers who can distribute the Kit to those newly diagnosed with dementia and their carers, or otherwise direct them to it

• Having a Project team that is flexible enough to accommodate consumer preferences in designing resources and different ways of conducting the Project

The importance of using an appropriate measuring tool and in engaging an appropriate cohort was also evident.

Recommendations Recommendations for a robust and usable health literacy process for developing consumer health resources:

Using a realist evaluation framework:

4. Identify the outcome/behaviours that you want to change (in this case, the process for developing health literacy resources that are robust, usable and sustainable)

a. Identify the need and purpose of the health resource (e.g. using an in-depth needs analysis).

b. Engage group of consumers and other key stakeholders (e.g. clinicians, clinical advisors) as early as possible to co-design the health resource and engage with the project.

c. Plan and budget for the resource to be sustainable and available in a variety of ways (e.g. printing, online hosting, design).

5. Gather data from all interventions (actions) involved in the project (e.g. literature review, reports about

workshops, interview data). Maximise the diversity of data (e.g. draw data from different sources and events) to strengthen the evaluation.

6. Analyse the data to identify the generative mechanisms, that is, the factors that caused/did not cause the

outcomes or behaviours to occur. Consider the influence of the specific contextual factors on outcomes or behaviours (‘for whom and in what circumstances did an outcome occur’). Generative mechanisms for developing health literacy resources could include:

a. Recruiting an appropriate target audience to obtain authentic feedback on the usefulness/effectiveness of the resource. In the case of the Dementia Health Literacy Project, the target audience would be those newly diagnosed with dementia and their carers and those clinicians and health service providers who have the opportunity to disseminate the resource.

b. Asking targeted questions that are likely to demonstrate the use and effectiveness of the resource. It may be more appropriate in some circumstances to seek the lived experience in place of, or in addition to, validated quantitative tools.

c. Establishing strong engagement with clinicians and other health service workers during the development of the resource to maximise its subsequent use.

Generative mechanisms can then be targeted to produce the desired outcomes or behaviours.

20

Recommendations and strategies to implement the Kit on a wider geographical scale:

1. Incorporate plans for transferability into all stages of the project (planning, co-design, resource development, implementation and feedback, dissemination and sustainability).

2. Discuss future plans with key stakeholders from other regions in the initial stages of the project.

3. Identify aspects of the resource that may be transferrable to other regions/applications (e.g. information on specific health conditions).

4. Build transferability into the design.

5. Disseminate widely using key stakeholders and their networks.

21

References Alzheimer’s Australia NSW, (2016). Dementia Prevalence Estimate in NSW 2016-2050. Provided to NCPHN.

[accessed March 2016]. Australian Commission on Safety and Quality in Health Care. (2014). National statement on health literacy:

taking action to improve safety and quality. Retrieved from: https://www.safetyandquality.gov.au/wp-content/uploads/2014/08/Health-Literacy-Taking-action-to-improve-safety-and-quality.pdf

Brown, L., Hansnata, E., & La, H. A. (2017). Economic cost of dementia in Australia 2016-2056. Retrieved from University of Canberra: http://www.canberra.edu.au/centres/ucigpa

Deakin University. (2017). Optimising health literacy to improve health and equity. Retrieved from: http://www.ophelia.net.au/about-ophelia

Deloitte Access Economics (2011) Dementia Across Australia: 2011-2050. Retrieved from: https://fightdementia.org.au /sites/default/files/20111014_Nat_Access_DemAcrossAust.pdf [Accessed January 2015].

Forrest, S., Myhill, A., & Tilley, N. (2005). Practical lessons for involving the community in crime and disorder problem-solving. Home Office. Retrieved from: http://www.popcenter.org/problems/street_prostitution/PDFs/Forrest_etal_2005.pdf

Hong, Y. A., & Cho, J. (2016). Has the Digital Health Divide Widened? Trends of Health-Related Internet Use Among Older Adults From 2003 to 2011. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, DOI: 10.1093/geronb/gbw100.

Kobayashi, L. C., Wardle, J., Wolf, M. S., & von Wagner, C. (2014). Aging and functional health literacy: a systematic review and meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, DOI: 10.1093/geronb/gbu161.

Osborne, R.H. Batterham, R., Elsworth, G.R., Hawkins, M., & Buchbinder, R. (2013). The grounded theory, psychometric development and initial validation of the Health Literacy Questionnaire (HLQ). BMC Public Health, 13:658.

Pawson, R., & Tilley, N. (1997). Realist Evaluation. London: Sage. Sudore, R. L., & Schillinger, D. (2009). Interventions to improve care for patients with limited health literacy.

Journal of clinical outcomes management: Journal of Science Communication, 16(1): 20. Van der Roest, H. G., Meiland, F. J., Comijs, H. C., Derksen, E., Jansen, A. P., van Hout, H. P., et al. (2009). What

do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics, 21(5): 949-965.

Volandes, A. E., Paasche-Orlow, M. K., Barry, M. J., Gillick, M. R., Minaker, K. L., Chang, Y., et al. (2009). Video decision support tool for advance care planning in dementia: randomised controlled trial. British Medical Journal, 338: b2159.

Volandes, A. E., Paasche-Orlow, M., Gillick, M. R., Cook, E. F., Shaykevich, S., Abbo, E. D., & Lehmann, L. (2008). Health literacy not race predicts end-of-life care preferences. Journal of palliative medicine, 11(5): 754-762.

Westhorp, G. (2014). Realist Impact Evaluation. Retrieved from: London: http://odi.org/methodslab

Dementia Health Literacy Project

22

Appendix 1 Checklist for Consumer-Friendly Information


23


24

Appendix 2: Needs Analysis – Summary Q1 What is your post code?

Answered: 57 Skipped: 0

# Responses Date 1 2487 7/28/2017 12:28 PM

2 2484 7/19/2017 11:26 AM

3 2485 7/13/2017 11:26 AM

4 2486 7/13/2017 11:12 AM

5 2489 6/30/2017 12:36 PM

6 2489 6/30/2017 12:24 PM

7 2489 6/30/2017 12:17 PM

8 2485 6/26/2017 10:39 AM

9 2486 6/23/2017 9:04 AM

10 2488 6/20/2017 4:29 PM

11 2484 6/19/2017 11:55 AM

12 2486 6/19/2017 11:47 AM

13 2487 6/19/2017 11:43 AM

14 2486 6/19/2017 10:58 AM

15 2487 6/16/2017 10:58 AM

16 2489 6/16/2017 10:55 AM

17 2481 6/16/2017 10:52 AM

18 2483 6/16/2017 10:48 AM

19 2479 6/16/2017 10:43 AM

20 2482 6/16/2017 8:55 AM

21 2486 6/13/2017 4:00 PM

22 2484 6/13/2017 3:57 PM

23 2486 6/13/2017 3:55 PM

24 2486 6/13/2017 3:51 PM

25 2485 6/7/2017 10:39 AM

26 2470 6/6/2017 5:57 PM

27 2487 6/6/2017 9:28 AM

28 2484 6/6/2017 9:19 AM

29 2484 6/1/2017 10:41 AM

30 2484 6/1/2017 10:39 AM

31 2486 6/1/2017 10:35 AM

32 2486 6/1/2017 10:31 AM

33 2487 6/1/2017 10:28 AM

34 2486 5/31/2017 2:54 PM

# Responses Date

35 2486 5/31/2017 2:51 PM

36 2486 5/31/2017 2:46 PM

37 2485 5/31/2017 2:41 PM

38 2485 5/31/2017 2:38 PM

39 2484 5/31/2017 2:30 PM

40 2487 5/31/2017 2:20 PM

41 2486 5/31/2017 2:16 PM

42 2486 5/31/2017 2:12 PM

43 2484 5/30/2017 3:41 PM

44 2485 5/30/2017 3:38 PM

45 2486 5/30/2017 3:34 PM

46 2486 5/30/2017 3:32 PM

47 2486 5/29/2017 12:12 PM

48 2486 5/29/2017 12:03 PM

49 2485 5/29/2017 10:58 AM

50 2486 5/29/2017 10:54 AM

51 2486 5/29/2017 10:21 AM

52 2452 5/27/2017 5:10 PM

53 2486 5/23/2017 10:59 AM

54 2478 5/22/2017 1:45 PM

55 2483 5/22/2017 1:18 PM

56 2489 5/20/2017 1:13 PM

57 2489 5/20/2017 11:13 AM


24

Q2 I am a:


Person with dementia

Carer, family member or...

Other (please say who)

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Answer Choices Responses

Person with dementia 12.50% 7

Carer, family member or friend of someone with dementia 78.57% 44

Other (please say who) 8.93% 5

TOTAL 56

# Other (please say who) Date

1 Surviving spouse of deceased dementia sufferer 6/23/2017 9:04 AM

2 Person with bad memory 6/13/2017 4:00 PM

3 Former carere- husband passed away 15th Jan 2016 4 years with dementia 6/1/2017 10:35 AM

4 ACAT assessor 5/22/2017 1:45 PM

5 Service provider 5/22/2017 1:18 PM


25

Q3 Who made the diagnosis of dementia?


My usual doctor

Specialist Geriatrician

Specialist Neuro...

Other (please specify)

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


My usual doctor 32.08% 17

Specialist Geriatrician 69.81% 37

Specialist Neuro Psychologist 11.32% 6

Other (please specify) 11.32% 6

Total Respondents: 53

# Other (please specify) Date

1 neurologist 7/28/2017 12:28 PM

2 Self evident 6/19/2017 11:55 AM

3 The psychologist doesn't think it's dementia 6/13/2017 4:00 PM

4 Not yet diagnosed 6/1/2017 10:28 AM

5 GP Jennie Soden, Geratrician Dr Khateeb 5/31/2017 2:16 PM

6 Social Worker Tweed Hospital 5/29/2017 12:03 PM


26

Q4 After the diagnosis of dementia, what were your main concerns? Tick all that apply.


Changed behaviours

Memory changes

Planning for the future

Information about the...

Changes in social...

Staying independent...

Respite (options...

Physical changes

Help at home (e.g....


Work

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


27


Changed behaviours 73.08% 38

Memory changes 69.23% 36

Planning for the future 61.54% 32

Information about the progression of dementia 53.85% 28

Changes in social activities 50.00% 26

Staying independent with daily routines like driving, shopping, etc. 46.15% 24

Respite (options available for short and long breaks) 44.23% 23

Physical changes 42.31% 22

Help at home (e.g. showering, cleaning, transport) 38.46% 20


Work 15.38% 8



1 Non recognition of partner 6/23/2017 9:04 AM

2 I miss the ability to converse 6/19/2017 10:58 AM

3 Transport 6/16/2017 10:43 AM

4 Independent living 6/13/2017 3:55 PM

5 Combined with his mental illness 6/6/2017 9:28 AM

6 Driving 5/31/2017 2:54 PM

7 Driving 5/31/2017 2:51 PM

8 Driving 5/30/2017 3:41 PM

9 Driving 5/30/2017 3:32 PM

10 Now in nursing home. Had kept at home before that 5/29/2017 12:03 PM

11 How I would cope with changing behaviour 5/23/2017 10:59 AM

12 Early Dementia, few changes at present 5/20/2017 1:13 PM


28

Q5 Which of the above was your top concern?


# Responses Date

1 Changed behaviours 7/28/2017 12:28 PM

2 Planning for the future 7/19/2017 11:26 AM

3 Planning for the future (the unknown) 7/13/2017 11:12 AM

4 Staying independent 6/30/2017 12:36 PM

5 Memory changes 6/30/2017 12:17 PM

6 Information about progression 6/26/2017 10:39 AM

7 Memory 6/20/2017 4:29 PM

8 Staying independent 6/19/2017 11:55 AM

9 Staying independent 6/19/2017 11:47 AM

10 My mother staying independent 6/19/2017 11:43 AM

11 Respite- I was becoming impatient 6/19/2017 10:58 AM

12 All of the above 6/16/2017 10:55 AM

13 Memory changes 6/16/2017 10:52 AM

14 Changed behaviours 6/16/2017 10:48 AM

15 Planning for the future 6/16/2017 10:43 AM

16 Information 6/16/2017 8:55 AM

17 Memory, forget what was going to say 6/13/2017 4:00 PM


19 Living at home independently 6/13/2017 3:55 PM



22 STAYING INDEPENDENT 6/6/2017 5:57 PM

23 Memory/behaviours 6/6/2017 9:28 AM



26 How to care on a day to day basis 6/1/2017 10:35 AM


28 How I would cope 5/31/2017 2:30 PM



31 Planning for future 5/31/2017 2:12 PM

32 Progression 5/30/2017 3:41 PM

33 Progress of dementia 5/30/2017 3:38 PM

34 As above 5/30/2017 3:34 PM




38 Memory 5/29/2017 10:58 AM

39 Help at home 5/29/2017 10:54 AM


29

40 Staying independent like work, driving 5/29/2017 10:21 AM


42 Coping with behavioural changes 5/23/2017 10:59 AM

43 Planning for the future 5/20/2017 1:13 PM

44 Information about the progression of Dementia 5/20/2017 11:13 AM


30

Q6 Did you receive enough information about dementia when you saw this doctor/specialist?


Yes, a lot of information

Yes, some information

No, not enough information ...

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Yes, a lot of information 21.15% 11

Yes, some information 42.31% 22

No, not enough information was given 36.54% 19

TOTAL 52


31

Q7 What information about dementia would you have liked more of?


# Responses Date

1 Progression. Medication 7/28/2017 12:28 PM

2 We were not given any information 7/19/2017 11:26 AM

3 As I was dealing with early onset dementia the hardest thing was getting diagnosis after that no info.

7/13/2017 11:12 AM

4 Cause of dementia and treatment of above 6/30/2017 12:17 PM

5 Nothing now 6/26/2017 10:39 AM

6 Possible responses to changed behaviour 6/23/2017 9:04 AM

7 Medical 6/20/2017 4:29 PM

8 Services available. Problems- lack of funding to get services was a nightmare 6/19/2017 11:55 AM

9 Receiving help at home for my mum who was dad's carer 6/19/2017 11:47 AM

10 How to tap into services in the area and what respite was available 6/19/2017 11:43 AM

11 Treatments available 6/19/2017 10:58 AM

12 Progression of the disease and medical treatment 6/16/2017 10:48 AM

13 What type of dementia does he have What to expect-stages of dementia What does his behaviour tell me eg picking at his skin?

6/16/2017 10:43 AM

14 To get help 6/16/2017 8:55 AM

15 Medication types, how much, when to stop, new drugs, trials 6/7/2017 10:39 AM

16 what to expect, what to do if I was worried about something, where to go to get help or advice.

6/6/2017 5:57 PM

17 How to stay sane? 6/6/2017 9:28 AM

18 Progression of dementia info 6/6/2017 9:19 AM

19 About progress of illness 6/1/2017 10:39 AM

20 What changes would take place, but found out everyone is different 6/1/2017 10:35 AM

21 Strategies to deal with behavioural changes 5/31/2017 2:20 PM

22 As my wife's carer I have found her reasonable to look after 5/31/2017 2:16 PM

23 None 5/31/2017 2:12 PM

24 How to cope 5/29/2017 12:03 PM

25 How better to deal with it 5/29/2017 10:58 AM

26 Information on therapies to improve his life 5/29/2017 10:54 AM

27 Frontal temporal lobe dementia 5/29/2017 10:21 AM

28 Information on all the different dementias and the different associated behaviours 5/27/2017 5:10 PM

29 Anything- about organizations and what help I could get 5/23/2017 10:59 AM

30 Respite service 5/22/2017 1:18 PM

31 What to expect and how fast the dementia was likely to advance 5/20/2017 11:13 AM


32

Q8 Did you receive enough information about support and services for people with dementia when you saw this doctor/specialist?


Yes, a lot of information

Yes, some information

No, not enough information ...

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Yes, a lot of information 12.00% 6

Yes, some information 50.00% 25

No, not enough information was given 38.00% 19

TOTAL 50


33

Q9 What information about dementia support and services would you have liked more of?


# Responses Date

1 NDIS has made it difficult to get updated information 7/28/2017 12:28 PM

2 We were not given information 7/19/2017 11:26 AM

3 After diagnosis I was told "it''s not going to get any better, good luck". It was not til I got ACAT assessment that I got info.

7/13/2017 11:12 AM

4 Who to contact to find out more information 6/30/2017 12:36 PM

5 We were given as much support as possible at the time 6/30/2017 12:17 PM

6 Navigating service providers, funding, Centrelink all a nightmare until you get a service provider. This is especially the case in country areas. Even now a dementia specialist is hard to access because they don't do home visits or nursing home visits for incapacitated and what good is it to Murwillumbah people if your mother's in a wheelchair, incontinent and has anxiety about being moved form her normal environment. The system works best for those who are in a better physical situation.

6/19/2017 11:55 AM

7 Medication and respite 6/19/2017 11:47 AM

8 What help was available 6/19/2017 11:43 AM

9 Information on treatments. I was told the condition could not be reversed but hopefully medication would prolong life

6/19/2017 10:58 AM

10 How to cure it 6/16/2017 10:55 AM

11 Information about respite services and advice on how I could help my wife going forward 6/16/2017 10:48 AM

12 In order to plan for our future when can I expect to have to place him in a high care home? 6/16/2017 10:43 AM

13 I want to talk to a person not be transferred round and round 6/16/2017 8:55 AM

14 Help for the carer 6/13/2017 3:51 PM

15 Info about all areas of dementia support, age care, doctors 6/7/2017 10:39 AM

16 where to turn to when things got really bad 6/6/2017 5:57 PM

17 What services were out there to support me (the carer) 6/6/2017 9:19 AM

18 Help available 6/1/2017 10:39 AM

19 What respite was available. I would have liked a "one stop shop" to ask someone, but only learnt by people say "links & pieces of info".

6/1/2017 10:35 AM

20 Respite options, support for carers+++++ 5/31/2017 2:20 PM

21 None 5/31/2017 2:12 PM

22 More one on one time with consultant Kate Minehan Dementia Behaviour Management Service. This service was suggested as my husband is a very stubborn person normally but now with dementia my life is very stressful

5/29/2017 12:12 PM

23 Managing day to day changes 5/29/2017 12:03 PM

24 How best to tackle it 5/29/2017 10:58 AM

25 who to talk to about dementia and the support and services available 5/29/2017 10:21 AM

26 As much as there is to know about Dementia 5/23/2017 10:59 AM

27 Who to contact for more information 5/20/2017 11:13 AM


34

Q10 If you did receive information, was it easy to read and understand?


Yes

No

I did not receive...

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Yes 62.00% 31

No 8.00% 4

I did not receive information 30.00% 15

TOTAL 50


35

Q11 If you found more information about dementia elsewhere, where did you find it?


Visiting the doctor/speci...

Nurse

Other health professional...

Internet

Printed information

Verbal information...

Other (please

specify)

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


Visiting the doctor/specialist again 31.37% 16

Nurse 3.92% 2

Other health professional (please specify below) 27.45% 14

Internet 47.06% 24

Printed information 43.14% 22

Verbal information e.g. family/friend (please specify below) 29.41% 15




1 Lifebridge and similar services 7/19/2017 11:26 AM

2 Attending seminars 6/30/2017 12:36 PM

3 My nursing background/Social workers/Attending dementia info days/Life experience 6/30/2017 12:24 PM

4 Alzheimer's Australia were very helpful 6/23/2017 9:04 AM

5 My mother had Alzheimers 6/20/2017 4:29 PM

6 Griffith University Hospital. Enberel treatment 8 weeks 6/19/2017 10:58 AM


36

7 Family working in the field 6/16/2017 10:58 AM

8 Byron Respite Service 6/16/2017 10:48 AM

9 Outreach respite centre- "carer" 6/16/2017 10:43 AM

10 Barbara Chambers (Byron Shire Respite Service) 6/16/2017 8:55 AM

11 Social worker 6/13/2017 3:57 PM

12 Occupational Therapist 6/13/2017 3:51 PM

13 Centrelink 6/7/2017 10:39 AM

14 ACAT and Commonwealth Respite and Carelink Centre 6/6/2017 9:19 AM

15 Aged and dementia services Kingscliff 6/1/2017 10:41 AM

16 3 day program on dementia, meeting others in same situatio, Lifebridge 5/31/2017 2:51 PM

17 ACAT meetings 5/31/2017 2:41 PM

18 Dementia Outreach Service 5/31/2017 2:38 PM

19 Visits specialist every 6 months 5/31/2017 2:16 PM

20 I work in aged care and have a good knowledge 5/31/2017 2:12 PM

21 Dementia Outreach, verbal information from family 5/30/2017 3:41 PM

22 Dementia Outreach 5/30/2017 3:38 PM

23 Dementia Outreach 5/30/2017 3:34 PM

24 Healthy Minds Clinic Robina Private Hospital 5/30/2017 3:32 PM

25 Seminars run by Alzheimers Australia 5/29/2017 12:03 PM

26 From local dementia group 5/29/2017 10:58 AM

27 Lifebridge 5/29/2017 10:21 AM

28 A television ad lead to Alzheimers Assoc I rang their help line 5/23/2017 10:59 AM

29 Own Nursing background/a Social Worker/info.days 5/20/2017 1:13 PM

30 Church programmes on Dementia 5/20/2017 11:13 AM


37

Q12 Which information (e.g. book from library, leaflet, website, service, webinar or other) was the most helpful?


# Responses Date

1 Nurse from aged care 7/28/2017 12:28 PM

2 Lifebridge 7/19/2017 11:26 AM

3 Information provided by ACAT books etc 7/13/2017 11:12 AM

4 Seminars 6/30/2017 12:36 PM

5 One of the most helpful- attending dementia info days 6/30/2017 12:24 PM

6 Doctor/specialist 6/30/2017 12:17 PM

7 Websites 6/26/2017 10:39 AM

8 Alzheimer's Australia staff DBMAS 6/23/2017 9:04 AM

9 Talking to others 6/20/2017 4:29 PM

10 Carers dementia information day Commonwealth respite and Carelink centre 6/19/2017 11:47 AM

11 My Aged Care website 6/19/2017 11:43 AM

12 Alzheimer's trial @Griffith Uni 6/19/2017 10:58 AM

13 Family 6/16/2017 10:58 AM

14 Don't remember 6/16/2017 10:52 AM

15 All about the same 6/16/2017 10:48 AM

16 Regular newsletter form Respite Centre - "Carer" 6/16/2017 10:43 AM

17 Talking and her listening 6/16/2017 8:55 AM

18 leaflets service 6/13/2017 3:57 PM

19 Website 6/7/2017 10:39 AM

20 some internet help 6/6/2017 5:57 PM

21 Google 6/6/2017 9:28 AM

22 ACAT staff and respite and Carelink centre staff 6/6/2017 9:19 AM

23 Alzheimer Australia website 6/1/2017 10:39 AM

24 leaflet 6/1/2017 10:35 AM

25 Info from Aged Care and Alzheimers 5/31/2017 2:54 PM

26 Local GP started with good information 5/31/2017 2:51 PM

27 website 5/31/2017 2:46 PM

28 Leaflet and book from ACAT 5/31/2017 2:41 PM

29 Dementia Outreach Service 5/31/2017 2:38 PM

30 website 5/31/2017 2:20 PM

31 Dementia Outreach Seniors Expo 5/30/2017 3:41 PM

32 website, Dementia Outreach 5/30/2017 3:38 PM

33 Service & website 5/30/2017 3:34 PM

34 Alzheimers Association online 5/30/2017 3:32 PM

35 3 day program for sufferers & carers- Lifebridge @ Kingscliff, one day information session with "Home Instead" (Qld/Nth Rivers Organisation), one day information session-Alzheimers Australia @Twin Towns Club

5/29/2017 12:12 PM

36 Lifebridge Kingscliff NSW 5/29/2017 12:03 PM

37 service 5/29/2017 10:58 AM


38

38 Many websites 5/29/2017 10:54 AM

39 Service provider from Lifebridge 5/29/2017 10:21 AM

40 Leaflets from TAFE 5/27/2017 5:10 PM

41 DVDs- Glen Campbell's life Many books I have borrowed ALL literature from Alzheimer's assoc

5/23/2017 10:59 AM

42 Book and leaflet 5/22/2017 1:45 PM

43 CRCC 5/22/2017 1:18 PM

44 All helpful, especially Dementia information days, also hearing/viewing interviews and discussions on Radio/TV

5/20/2017 1:13 PM

45 Alzheimer's Australia website 5/20/2017 11:13 AM


39

Q13 Why was this information helpful?


# Responses Date

1 Able to ask specific questions 7/28/2017 12:28 PM

2 It clarified problems and gave us focus 7/19/2017 11:26 AM

3 Well written easy to understand 7/13/2017 11:12 AM

4 Detailed info was given. People with dementia contributed. Able to ask questions 6/30/2017 12:36 PM

5 Opportunity to interact with dementia sufferes, carers, professionals 6/30/2017 12:24 PM

6 Yes because we were given good advice 6/30/2017 12:17 PM

7 Lots of it 6/26/2017 10:39 AM

8 It helped me to respond to changes in behaviour 6/23/2017 9:04 AM

9 Sometimes helpful for stress 6/20/2017 4:29 PM

10 Understanding dementia 6/19/2017 11:47 AM

11 Difficult to navigate 6/19/2017 11:43 AM

12 Weekly test and report although we received a placebo. Apparently a course is available although not on PBS

6/19/2017 10:58 AM

13 As the disease progresses so the information changes. It wasn't very helpful at all 6/16/2017 10:48 AM

14 Practical advice 6/16/2017 10:43 AM

15 She comes 6/16/2017 8:55 AM

16 It helped us understand and cope...gave us help 6/13/2017 3:57 PM

17 read it to understand it 6/7/2017 10:39 AM

18 gave me an overview of dementia 6/6/2017 5:57 PM

19 Yes 6/6/2017 9:28 AM

20 I wasn't aware of emergency respite i my home. Also respite info generally 6/6/2017 9:19 AM

21 Anything helps 6/1/2017 10:39 AM

22 simple to read 6/1/2017 10:35 AM

23 Easy to comprehend 5/31/2017 2:54 PM

24 a world of information 5/31/2017 2:51 PM

25 Easy to read 5/31/2017 2:41 PM

26 Easy to read 5/31/2017 2:38 PM

27 Easy to understand, quite a lot of information 5/31/2017 2:20 PM

28 Friendly service 5/30/2017 3:41 PM

29 To enlighten carers - not on your own 5/29/2017 12:12 PM

30 Talking to people who understood day to day problems 5/29/2017 12:03 PM

31 It all helps 5/29/2017 10:58 AM

32 Informative 5/29/2017 10:54 AM

33 Was in a small group arrangement for people who had younger onset dementia 5/29/2017 10:21 AM

34 Very 5/27/2017 5:10 PM

35 Very 5/23/2017 10:59 AM

36 easy to read, follow and understand 5/22/2017 1:45 PM

37 To access emergency respite 5/22/2017 1:18 PM

38 Hearing from a wide range of experts, people with Dementia and Carers, listening to Questions and Answer sessions

5/20/2017 1:13 PM

39 We found some info on what to expect and how to contact relevant groups 5/20/2017 11:13 AM


40

Q14 Do you know of any local services in the Tweed Heads area that support people with dementia?


No

Yes (please name them):

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%


No 37.74% 20

Yes (please name them): 62.26% 33

TOTAL 53

# Yes (please name them): Date

1 Lifebridge 7/28/2017 12:28 PM

2 Lifebridge, Dementia Advocates Group 7/19/2017 11:26 AM

3 Dementia Advisory group 6/30/2017 12:36 PM

4 Dementia Action Group (DAG), Dementia Friendly Community Project. I know other individuals and groups provide supportive services through professional as well as volunteers. Alzheimer's Australia website under "Support and Services" NSW would give more information

6/30/2017 12:24 PM

5 Lifebridge aged care 6/30/2017 12:17 PM

6 DBMAS 6/23/2017 9:04 AM

7 Lifebridge 6/20/2017 4:29 PM

8 As above and Lifebridge 6/19/2017 11:47 AM

9 Lifebridge 6/19/2017 11:43 AM

10 Lifebridge, also Commonwealth Respite Centre 6/19/2017 10:58 AM

11 Lifebridge 6/16/2017 10:58 AM

12 Bupa 6/16/2017 10:55 AM

13 Brunswick Respite 6/16/2017 10:52 AM

14 Tweed Byron respite service 6/13/2017 3:57 PM

15 Aged and dementia services 6/1/2017 10:41 AM

16 UPA 6/1/2017 10:35 AM

17 Lifebridge Kingscliff 6/1/2017 10:28 AM

18 Alzheimers and Aged Care 5/31/2017 2:54 PM


41

19 Lifebridge, Dementia Outreach Service 5/31/2017 2:46 PM

20 Lifebridge East 5/31/2017 2:30 PM

21 None listed 5/31/2017 2:12 PM

22 Not listed 5/30/2017 3:38 PM

23 Lifebridge 5/30/2017 3:34 PM

24 Louise Moore-Jouir/Shelley Stephens Dementia Outreach Service- Far North Coast 5/29/2017 12:12 PM

25 Lifebridge-carers from Whiddon 5/29/2017 12:03 PM

26 Local group 5/29/2017 10:58 AM

27 Lifebridge 5/29/2017 10:54 AM

28 Lifebridge 5/29/2017 10:21 AM

29 Lifebridge Kingscliff 5/23/2017 10:59 AM

30 Lifebridge, Byron Shire Respite Service, DOS 5/22/2017 1:45 PM

31 Lifebridge, Byron Shire Respite Service 5/22/2017 1:18 PM

32 Dementia Action Group,Consumer Advisory Group 5/20/2017 1:13 PM

33 Dementia Advocates Group 5/20/2017 11:13 AM


42

Q15 Is there anything else you would like to tell us?


# Responses Date

1 I have sometimes felt that needs of carers aren't given enough weight 7/19/2017 11:26 AM

2 After caring for my mother I found very little help from anyone. Each visit to hospital help was offered on her return home. 6 weeks help and 2 showers!

7/13/2017 11:26 AM

3 Was involved in a carers support group from Ballina this was through ACAT and gov health services

7/13/2017 11:12 AM

4 It would be helpful if the index of yellow pages in telephone directories had a heading "Dementia support" or something similar so that groups or individuals giving information or support could be listed (and presumably need to pay for the privilege!)

6/30/2017 12:24 PM

5 No 6/30/2017 12:17 PM

6 My wife died on 29/08/16 following a stroke. Vascular dementia was given as a contributing factor

6/23/2017 9:04 AM

7 Stressful for carer because of anger displayed by patient 6/20/2017 4:29 PM

8 A lot old people are quire bad before they let it known they have problems and they are often beyond much help. Aged care in general is a nightmare for carers to navigate!

6/19/2017 11:55 AM

9 I completed a course as advise by the nursing home with Uni of Tasmania to help further understand my dad's dementia when my mum passed away

6/19/2017 11:47 AM

10 More help is needed for family members for respite More education 6/19/2017 11:43 AM

11 Yes- how can we be updated on the ongoing test program? 6/19/2017 10:58 AM

12 Local respite centres inadequate 6/16/2017 10:58 AM

13 No 6/16/2017 10:55 AM

14 The people (staff) at Byron Shire respite service deserve a medal 6/16/2017 10:48 AM

15 I've started filling this is to be helpful but don't think it's relevant 6/13/2017 4:00 PM

16 Little to no services in Tweed More open less secrecy 6/13/2017 3:55 PM

17 Dementia doesn't come with instructions - it effects different people in different ways. My mother is a highly intelligent human being who suffered depression as well and this added to our worries. People didn't seem to know how to handle someone like her and we felt very isolated by that.

6/6/2017 5:57 PM

18 Just to have one place 6/1/2017 10:35 AM

19 My husband has a brain injury and also now has dementia so my case is very different from other people with dementia

6/1/2017 10:31 AM

20 Carer for mother with poor short term memory 6/1/2017 10:28 AM

21 Any progress with new info with this disease 5/31/2017 2:54 PM

22 Yes- anything would help 5/31/2017 2:41 PM

23 We have a 55 year old with problems. Have some experience in caring 5/31/2017 2:30 PM

24 Everyone assumes that I know about dementia because I am an RN (I am a cardiac nurse and have little knowledge regarding caring for a person with dementia

5/31/2017 2:20 PM

25 The Tweed Dementia Outreach Service has a "Cafe Connection" where clients & carers have coffee together once a month. It is great to "catch up" with others in the same situation

5/29/2017 12:12 PM

26 Need more nursing staff in nursing homes 5/29/2017 12:03 PM

27 No 5/29/2017 10:58 AM

28 Lifebridge service needs to be more customer focussed 5/29/2017 10:54 AM

29 Would of liked to of had "ongoing" support not just a few weeks of informatin about dementia. Also to have been contacted on a regular basis

5/29/2017 10:21 AM


43

30 My husband was misdiagnosed by two Geriatricians- PET scan by 3rd Geriatrician showed he had mild tempero-parietal dementia not Alzheimer's. 1st specialist had him on 2 conflicting drugs. It has taken years with many tests to finally get a correct diagnosis. Specialists should be made accountable.

5/23/2017 10:59 AM


44

Q16 If you would like to know more about the dementia “tool kit” in the future, please provide your contact details. This is optional.



Name: 100.00% 33

Email address or phone number: 96.97% 32

# Name: Date

1 Pamela Payne 7/19/2017 11:26 AM

2 Graeme Hodgkinson 6/30/2017 12:36 PM

3 Jim Payne 6/23/2017 9:04 AM

4 Julianne Boland 6/19/2017 11:47 AM

5 Peter Millar 6/19/2017 10:58 AM

6 Ron Riley 6/16/2017 10:55 AM

7 K. Demoisy 6/16/2017 10:52 AM

8 Colleen Ellen Franklin 6/16/2017 10:43 AM

9 Pat Macrae 6/13/2017 4:00 PM

10 Peter Speed (Husband/carer) 6/13/2017 3:55 PM

11 Jonathan Johnstone 6/7/2017 10:39 AM

12 Christine Allwood 6/6/2017 9:28 AM

13 Dina Davis 6/6/2017 9:19 AM

14 R Brulotte 6/1/2017 10:39 AM

15 Jean and John Mulligan 5/31/2017 2:54 PM

16 Maureen Bellette 5/31/2017 2:51 PM

17 Pam Ellis 5/31/2017 2:46 PM

18 Hugh McNeilage 34/192 Piggabeen Road Tweed Heads West 5/31/2017 2:41 PM

19 Chris Hanssen 5/31/2017 2:30 PM

20 Judith Vernon 5/31/2017 2:20 PM

21 Stewart Marshall 5/30/2017 3:41 PM

22 Christine & Wayne Brookes 5/30/2017 3:38 PM

23 Maureen Anspach 5/30/2017 3:34 PM

24 Daphne Vaughan 5/30/2017 3:32 PM

25 Davidson A.G. 5/29/2017 10:58 AM

26 Deirdre Cuttle 5/29/2017 10:54 AM

27 Brian Munro 5/29/2017 10:21 AM

28 Leone Niddrie 5/27/2017 5:10 PM

29 Cynthia Chapman (husband Derek) 5/23/2017 10:59 AM

30 Paul Woodford 5/22/2017 1:45 PM

31 Barbara Chambers 5/22/2017 1:18 PM

32 Wendy May Hodgkinson 5/20/2017 1:13 PM

33 Graeme Hodgkinson 5/20/2017 11:13 AM


45

# Email address or phone number: Date

1 [email protected] 7/19/2017 11:26 AM

2 304/1 Tweed Coast Road Hastings Point 2489 [email protected] 6/30/2017 12:36 PM







9 (07) 5590 9292 35 Hogans Road Bilambil NSW 2486 6/13/2017 3:55 PM





14 07 5524 4318 5/31/2017 2:54 PM

15 [email protected] 5/31/2017 2:51 PM


17 (07) 5599 7710 5/31/2017 2:41 PM

18 02 6672 1130 5/31/2017 2:30 PM



21 [email protected] 0411 567 642 5/30/2017 3:38 PM



24 Unit 305- 31 Florence Street Tweed Heads 2485 5/29/2017 10:58 AM


26 brian [email protected] 5/29/2017 10:21 AM


28 [email protected] (07) 5599 7335 5/23/2017 10:59 AM





Dementia Health Literacy Clinician Feedback

46

TOTAL

Appendix 3: Dementia Health Literacy Clinician Feedback

Q1 I am a:


General Practitioner

Medical Specialist


0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

General Practitioner

Medical Specialist Other

(please specify)

1 OT (Occupational Therapist) 8/10/2017 12:12 PM

2 Co ordinator for an "ageing" disability group home 8/10/2017 12:06 PM

3 RN 8/10/2017 12:02 PM

4 Byron Shire Respite Service Challenging Behaviours programme manager 8/8/2017 11:12 AM

5 CHSP client co ordinator 8/3/2017 12:16 PM

6 Aged care Clinet Co - ordinator 8/3/2017 12:15 PM

7 Pharmacist (daughter of a parent with Lewy Body Dementia) 8/1/2017 3:25 PM

8 Nurse Practitioner 7/28/2017 4:00 PM

9 Home Care Package Provider and Compacks 7/28/2017 3:57 PM

10 SMHOPS (Specialist Mental Health Older Persons service) 7/28/2017 3:53 PM

11 NUM (Nurse Unit Manager) 7/28/2017 3:51 PM

12 RN 7/28/2017 3:50 PM

13 Allied Health 7/28/2017 3:48 PM

14 Community Occulapational Therapist 7/28/2017 3:44 PM

15 DOS worker 7/28/2017 3:43 PM

16 CNS 7/28/2017 3:38 PM

17 Clinical nurse specialist 7/28/2017 3:36 PM

ANSWER CHOICES

# OTHER (PLEASE SPECIFY) DATE

RESPONSES 4.55% 1

0.00% 0

95.45% 21

22


47

18 RN (ICU) 7/28/2017 3:29 PM

19 Medical Officer working in Hospital 7/28/2017 3:27 PM

20 Registered Nurse 7/28/2017 3:24 PM

21 Clinical Nurse Consultant Psychogeriatrics/Aged Care 7/28/2017 3:21 PM


48

TOTAL

Q2 Do you find this Kit easy to read?

Answered: 21 Skipped: 1 Yes

No

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Yes No

1 It's really nicely presented 8/10/2017 12:12 PM

2 Some acronyms hard to google 8/10/2017 12:06 PM

3 It's good 8/3/2017 12:15 PM

4 Big font, attractive pictures 7/28/2017 4:00 PM

5 Well set out, just right amount of copy on pages. Nice use of colour 7/28/2017 3:57 PM

6 Very 7/28/2017 3:53 PM

7 Easy to read, lots of white space, large font. Love the artwork and start by Aunty Joyce 7/28/2017 3:48 PM

8 Very easy- large font. Have you asked a 8- 10 yr old child to read? Good test for Health Literacy 7/28/2017 3:36 PM

9 Yes I love the layout - very easy 7/28/2017 3:29 PM

10 Large print, simple direct language 7/28/2017 3:24 PM

ANSWER CHOICES

# COMMENT DATE

11 Very clear and easy to read 7/28/2017 3:21 PM

RESPONSES 100.00% 21

0.00% 0

21


49

TOTAL

Q3 Is the information in this Kit easy to understand?

Answered: 22 Skipped: 0 Yes

No

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Yes No

# COMMENT DATE

1 For the most part. It could depend on who is reading it eg screen shots of health services directory could be hard to follow

2 i like the sections: Mind, Health, Living and also the local services boxes. Good to have a section on Planning for the future

8/10/2017 12:12 PM 7/28/2017 3:57 PM

3 Very 7/28/2017 3:53 PM

4 Useful contacts. Clear headings in easy to understand language. Does not cover CALD population. Also, will it be available in different languages?

7/28/2017 3:48 PM

5 A bit more explanation about what RAS and ACAT do may be beneficial(or I might have missed it!)

7/28/2017 3:43 PM

ANSWER CHOICES

RESPONSES 100.00% 22

0.00% 0

22


50

TOTAL 21

Q4 Do you think this Kit will be beneficial for your patient/client’s knowledge of dementia services and support?


Definitely not

Unlikely

Maybe

Very likely

Definitely

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Definitely not

Unlikely Maybe

Very likely

Definitely

0.00% 0 0.00% 0 9.52% 2 19.05% 4 71.43%

ANSWER CHOICES RESPONSES


51

TOTAL 22

Q5 How likely are you to give a hard copy of this Kit to your patients/clients?


Definitely not

Unlikely

Maybe

Very likely

Definitely

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Definitely not

Unlikely Maybe

Very likely

Definitely

4.55% 1 4.55% 1 13.64% 3 31.82% 7 45.45%



52

TOTAL 22

Q6 How likely are you to print an online version of this Kit for your patients/clients?


Definitely not

Unlikely

Maybe

Very likely

Definitely

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Definitely not

Unlikely Maybe

Very likely

Definitely

0.00% 0 4.55% 1 27.27% 6 45.45% 10 22.73%



53

Q7 Do you have any other comments or suggestions?


1 As always- the challenge is keeping these up to date. In that way, printing off copies when there is someone maintaining the online versions would be beneficial but would be challenged by cost of colour printing)in Health Dept) but impact would not be the same in B & W

8/10/2017 12:12 PM

2 If it is relevant to Coffs. This is all Tweed. Make it local to Coffs 8/10/2017 12:08 PM

3 For me, patient not in a position to read. I was initially concerned it would involve medical 8/10/2017 12:06 PM

terminology that would be above my level of experience. It did not. Everything was explained and easy to follow. Thank you. This is a fabulous resource. I would love to see one that has Coffs Harbour based info/contacts 4 Directions for using MAC may be too difficult for age group targeted 8/10/2017 12:02 PM

5 The layout and contrast are easy to read "and asks you to read it". 8/8/2017 11:12 AM

6 Much needed resource 8/3/2017 12:16 PM

7 Lots of repetitive but that is understandable as there are lots of different topics covered. 8/3/2017 12:15 PM

8 I feel that the Planning for the future section should be at the beginning rather than at the end 8/1/2017 3:25 PM

due to the legal implications of a diagnosis of dementia. Consider bolding key words under Services and Support e.g. under My Aged Care bold first point, under Commonwealth Respite and Carelink Centre bold respite etc. Date of publication is August 2017? Page 15 click search as last step? Re driving consider the inclusion of the phrase "Driving is a responsibility not a right". Typo on page 41 "like as personal care" - "as" obviously superfluous. Page 45 private meal deliveries - consider more specific info other than "these are listed online" e.g a website link Maybe consider a summary flow chart with my aged care at the top. Consider inclusion of more than one person's comments e.g Judy For me dealing with a father with dementia has been the progressive loss of a parent accompanied by a corresponding role reversal where I have become the carer by default, and despite having two other siblings this has been something of a lonely journey. I have never personally contacted the support services available and only wish that I had been aware of them earlier. The dementia support kit provides a useful template for carers to access a range of services pertinent to the management of this progressively disabling condition. 9 I see people in remote areas who have limited /poor access to internet so are more likely to look 7/28/2017 4:00 PM

at a hard copy- also clients are rural/aged and not very tech savvy 10 I think that the pictures are well thought out and reflect a good variety of seniors/people living 7/28/2017 3:57 PM

with denmentia, I also think that the "life stories" are a great way to make a point and that people can relate to. I like the use of white spaces- like a pause to give people time to reflect on what they have just read. Great job! 11 Keep us posted please 7/28/2017 3:53 PM

12 Fabulous resource 7/28/2017 3:51 PM

13 Only maybe due to IC (intensive care) area I work in, not due ot Kit itself. Very good content, 7/28/2017 3:50 PM

lots of info, easy to read, accessible! 14 Valuable resource which collates all the important information well 7/28/2017 3:48 PM

15 Very clearly set out. Concise/easy to read 7/28/2017 3:44 PM

16 I' dlike to see one developed for Clarence Valley. Very comprehensive. ** One point re 7/28/2017 3:43 PM

Commonwealth Respite and Centrelink respite 1 800 number - it does not (in my area anyway) include arranging respite at all RAC facilites in Claranec. So they may offer respite several months away. If call another facility not included may get it much sooner. It's this sort of complexity that makes it difficult for families/carers. Need a lot of local knowledge. 17 But doubtful if GPs would. 1. ?? Why YOD and ATSI in living. What about GLBTI/NESB etc 2. 7/28/2017 3:36 PM

Physical activity should be in well-being 3. Love the section on My Aged Care 4.Nutrition - is vital component of Dementi Care. Should be included 5. ?Why MOW p 27 is in Physical activity. Should be in Nutrition 6. The Memory Clinic should be included as is a valuable service/needs to expand and is not driven by $$

# RESPONSES DATE

54

18 It may be helpful to have the page number reference for all the orgs in the phone book at the back? So its easy to find out who to call

19 1. Onine version should have direct links to all/most of the websites mentioned and patient/carers can click on and go directly to the sites. 2. A consolidated list of all websites mentioned in the book on one page

20 It would be great to have it in a brochure as a printed copy- will be black and white and just paper- less impact. How do we get a copy for Clarence?

21 page 42- could mention in home respite 7/28/2017 3:21 PM

Scales of health literacy – pre- and post- with confidence interval.

55

Appendix 4 The Ophelia Principles


56

Appendix 5: Health Literacy Questionnaire (pre- and post- use of the Tweed Dementia Support Kit)

Aim: To evaluate the impact of the Tweed Dementia Support Kit on health literacy.

Method: The Tweed Dementia Kit was evaluated using the Health Literacy Questionnaire which is an Australian validated health literacy tool that measures nine scales of health literacy (Figure 1)1. The Kit was provided to members of various over-65s social groups in the Tweed region. Participants completed the HLQ and then took the Kits home to read and use. They were contacted again 1-3 weeks later to take the post-HLQ and answer some additional questions about the Kit itself.

Figure 1:

Results: 24 participants completed the Pre-HLQ. Follow up data was collected for 13 participants (54%), so 11 participants (46%) were lost to follow up. Results showed improvement in 6 of the 9 domains of health literacy after having the Kit for 1-3 weeks. However, due to the small sample size, the improvements were not statistically significant.


57

The domains in which health literacy improved were (Appendix 1):

2. Having sufficient information to manage my health 4. Social support for health 6. Ability to actively engage with health care providers 7. Navigating the health care system 8. Ability to find good health information 9. Understanding health information well enough to know what to do

The domains in which health literacy did not improve were:

1. Feeling understood and supported by health care providers 3. Actively managing my health 5. Appraisal of health information

Discussion: The Tweed Dementia Support Kit was co-designed with community and using health literacy best practice. Improvements in 2/3 of the domains, may indicate that providing clear, plain language health information designed in partnership with community members could improve health literacy. In particular, empowering people to:

- Have sufficient information to manage their health - people feel confident that they have all the information that they need to live with and manage their condition and to make decisions.

- Navigate the health care system - find out about services and supports so they all their health needs are met.

- Find good health information - actively use a diverse range of sources to find information and stay up to date

- Understand health information well enough to know what to do - understand written information (including numerical information) in relation to their health (Deakin, 2014)

One aim of the Kits was to support people to make decisions about their future care early in their dementia journey, while they still have capacity to do so. The improvement trend in the domain that includes decision making is a promising sign that the Kits may achieve this aim.

The results also show that the Kits may have had an impact on people feeling they had stronger social support for their health and that information about these support services has been effectively delivered. The Kits were specifically designed to provide information about the social and support services available for people with dementia, their families and carers, rather than medical services.

Finally, improvements in the domain of actively engaging with health care providers may indicate that the information in the Kits gave people a sense of empowerment and control over their own health. This domain indicates the Kits may support people to be proactive about their health and feel in control in relationships with health care providers. People are able to seek advice from additional health care providers when necessary and they are persistent in getting what they need for their health.


58

1. Osborne RH, Batterham R, Elsworth GR, Hawkins M, Buchbinder R. The grounded theory, psychometric development and initial validation of the Health Literacy Questionnaire (HLQ). BMC Public Health. 2013;13:658.


59

2.6

2.7

2.8

2.9

3

3.1

3.2

3.3

3.4

3.5

PRE 2 POST 2

Domain 2: Having sufficient information to manage my health

HIGH CI LOW CI MEAN

2.7

2.8

2.9

3

3.1

3.2

3.3

3.4

3.5

PRE 3 POST 3

Domain 3: Actively managing my health

HIGH CI LOW CI MEAN

2.7

2.8

2.9

3

3.1

3.2

3.3

PRE 4 POST 4

Domain 4: Social support for health

HIGH CI LOW CI MEAN

2.7

2.8

2.9

3

3.1

3.2

3.3

3.4

3.5

PRE 1 POST 1

Domain 1: Health care provider support

HIGH CI LOW CI MEAN

0

0.5

1

1.5

2

2.5

3

3.5

PRE 5 POST 5

Domain 5: Appraisal of health information

HIGH CI LOW CI MEAN

3.653.7

3.753.8

3.853.9

3.954

4.054.1

4.15

PRE 6 POST 6

Domain 6: Ability to actively engage with health care

providers

HIGH CI LOW CI MEAN

0

0.5

1

1.5

2

2.5

3

3.5

4

4.5

PRE 7 POST 7

Domain 7: Navigating the health care system

HIGH CI LOW CI MEAN

3.4

3.5

3.6

3.7

3.8

3.9

4

PRE 8 POST 8

Domain 8: Ability to find good health information

HIGH CI LOW CI MEAN

3.6

3.7

3.8

3.9

4

4.1

4.2

4.3

PRE 9 POST 9

Domain 9: Understand health information well enough to know what to do

HIGH CI LOW CI MEAN

Documents

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