Information needs of people with dementia and carers

Information needs of people with dementia and carers

Published 2010 by Alzheimer s Society Devon House 58 St Katharine s Way London E1W 1LB T 020 7423 3500 F 020 7423 3501 E info@alzheimers.org.uk alzheimers.org.uk Registered charity no. 296645 A company limited by guarantee and registered in England no. 2115499 Alzheimer s Society 2010 Written by Samantha Sharp, Senior Policy Officer Typeset by Fish Books, Enfield Printed and bound in Great Britain Code 844

Contents Introduction...4 Summary of findings...4 Summary of recommendations...5 1 Research methods...6 1.1 Literature review...6 1.2 Questionnaire of people with dementia and carers...6 1.3 Market survey...6 1.4 Working group...7 1.5 Think Public work for Alzheimer s Society...7 2 Findings...8 2.1 What dementia information do people want?...8 2.2 What format do people prefer?...11 2.3 Are people getting the information they need?...13 2.4 What are the barriers to gathering information?...13 2.5 Additional considerations...16 3 Conclusions and recommendations...18 3.1 Conclusions...18 3.2 Recommendations...19 References...22 Appendix 1: Questionnaire...23 Appendix 2: Organisations contacted in the market survey...27

Introduction In recognition of the problems faced by people with dementia and their carers in accessing the information they need, objective 3 of the National Dementia Strategy for England is Good-quality information for those with diagnosed dementia and their carers. Providing people with dementia and their carers with good-quality information on the illness and on the services available both at diagnosis and throughout the course of their care. The Department of Health (DH) asked Alzheimer s Society to work with stakeholders to research the information needs of people with dementia. They asked Alzheimer s Society to make recommendations about what actions should be taken to enable them to: take forward implementation of the objective at a national level support local areas to improve provision of information regarding local services and support for people with dementia. This report presents findings from that research. It makes recommendations for action at a national level, but it is hoped that the evidence will be helpful in work done at a local level to meet the information needs of people with dementia and carers. Summary of findings While there is a fair amount of information on the information needs of carers of people with dementia, research into the information needs of people with dementia has been very limited. It is important that people with dementia are involved in the development of publications targeted at people with dementia, to ensure they are accessible and address issues of importance to them. A range of information already exists for carers of people with dementia. This is not the case for people with dementia, for whom there is a lack of accessible information, particularly in relation to emotional support. Despite the existence of information for carers, people report that their information needs are not met. Information is provided too late or not at all. A key problem is that people have to ask for information, rather than it being provided proactively. Most people do not know what they have to ask for. The complex range of services and staff with whom people with dementia and carers are in contact can be confusing. It is unclear which professional can provide particular pieces of information and no one professional has responsibility for providing the full range of information. This leads to unhelpful gaps.

Introduction 5 Summary of recommendations What is needed is provision of a core set of information, provided free of charge to each person with dementia and their carer at the time of diagnosis. These should provide a wide range of information, emotional support and signposts to sources of further information. The provision of these publications to each person with dementia and carer at the time of diagnosis should be a mandatory part of the care pathway. Longer term work should: Address how to support local areas to develop a framework for the provision of information about local support and services for people with dementia and carers. Research the most effective ways of providing information to particular groups of people with dementia, for example those with learning disabilities, people from black and minority ethnic groups and those with communication difficulties. Consider the training needs of staff in terms of providing information in a useful and sensitive manner. Investigate the most appropriate method for providing emergency information and advice.

1 Research methods 1.1 Literature review We carried out a review of the literature relating to the information needs of people with dementia. In common with previous reviews (for example to inform the National Institute for Health and Clinical Excellence/Social Care Institute for Excellence (NICE/SCIE) dementia clinical guideline) we found that there is limited published research on this topic. In particular there is very limited research on the specific needs of people with dementia, rather than carers. 1.2 Questionnaire of people with dementia and carers A questionnaire was sent out to 1,500 people with dementia and carers who were members of Alzheimer s Society. The response rate was 36 per cent, with 543 completed questionnaires received by the deadline. The vast majority of respondents (97.6 per cent) were carers and only 1.3 per cent were people with dementia. Respondents were asked about their experiences of gathering information about dementia following a diagnosis, as well as what information they had found most useful. It is important to bear in mind that respondents were members of Alzheimer s Society, meaning that they already had a level of access to information. Responses from people who were not in contact with the Society may be very different. A copy of the questionnaire is at Appendix 1 of this report. 1.3 Market survey A range of organisations were contacted and examples of the evidence they provide to people with dementia and carers were requested (Appendix 2 lists organisations that were contacted). In addition, they were asked for data about how this was used. Telephone interviews were carried out with a number of organisations that enabled a more in-depth discussion regarding their understanding of current provision and gaps in information for people with dementia and carers. Again, the majority of the individuals that these organisations would have been in contact with are carers rather than people with dementia.

Research methods 7 1.4 Working group We convened a working group of people with dementia, carers and professionals working in organisations that provide information for people with dementia and carers. This group met twice to discuss the findings of the research listed above and use their own knowledge and experience in developing advice for the DH. 1.5 Think Public work for Alzheimer s Society A separate piece of work was carried out by the company Think Public, to inform the development of Alzheimer s Society dementia adviser projects. They visited four Alzheimer s Society local services to find out what information people with dementia and their carers wanted to receive. Relevant findings have been inserted within this report, in section 2.1.

2 Findings We found that the evidence base regarding the information needs of people with dementia and their carers is limited. As noted this is particularly the case for the needs of people with dementia. We would recommend future research to address this important gap. In particular, it would be useful to look at the formats and styles that make information most accessible to people in different stages of dementia. 2.1 What dementia information do people want? 2.1.1 People s information needs vary Dementia is a condition that affects individuals differently. People may experience a different range of symptoms and rate of decline. In addition, their own circumstances and the context in which they are experiencing the condition will vary greatly. Individuals personal preference regarding how much information they receive and in which format also differs. The result is that individuals will have very different information needs. The evidence supports this supposition. The questionnaire findings demonstrate the wide range of information that people require and value. Respondents were asked to describe the dementia information that they had found most helpful. A broad range of answers was given and the high number of different responses reflected people s individual needs. The ten most frequently given responses are shown in Table 1 below. Table 1: Ten most helpful information sources Information source respondents preference (per cent) Meeting other people with first hand experience/sharing experience 74 (14) Help/advice on financial matters/how to claim benefits/funding 67 (12) Support for carers as well as people with dementia 54 (10) How dementia/disease is likely to progress/what to expect over time 48 (9) How to cope/caring for person with dementia 47 (9) Information on respite care/day centres 38 (7) Advice/help/info on practical matters/practical tips on caring 37 (7) Guidance/information from professionals eg doctors, social workers 37 (7) Alzheimer s Society (local branch) 35 (6) Advice on dealing with behaviour problems 31 (6)

Findings 9 2.1.2 There is a set of issues on which most people require information While acknowledging different individual needs, evidence from the literature review, market survey and questionnaire does suggest that there is a group of issues of fundamental importance on which the vast majority of people want to receive information following diagnosis. This reflects Think Public s finding that though people s information needs are complex, the actual information required is not infinite. Common topics include: what is dementia (and/or subtypes of dementia)? progression of the illness financial and legal information, including lasting powers of attorney benefits information local services and how to access them contact details for voluntary organisations advice on how to care for a person with dementia, particularly in coping with behavioural and psychological symptoms dementia medication and treatments. It is important to note that this is the information people require following diagnosis but, as members of the working group explained, as people progress along the journey of living with dementia they are likely to require information on different topics. The type of information that people require reflects the generally low levels of public knowledge regarding dementia and symptoms of dementia. Many carers reported that it would have been helpful to receive information and advice at an earlier stage on the impact that dementia can have on behaviour. Many people felt that they could have coped better if they had understood earlier that it was the dementia that had led to particular behaviour. In terms of when people want to receive information, Wald et al (2003) found 75 91 per cent of carers requested that information should be provided on diagnosis, rather than as the need arose or not at all. 1 2.1.3 Do the information needs of people with dementia differ from those of carers? There is little evidence regarding whether people with dementia would like different information to carers. Only one study looked at this question. It concluded that the information needs of people with dementia and carers were

10 The information needs of people with dementia and carers broadly similar. 2 However, there were two topics in the list of ten most important issues to carers that did not appear in people with dementia s list. These were: genetic aspects of Alzheimer s disease dealing with friends and families. The study also suggested carers appeared to be more interested in long-term planning. Over three-quarters of carers were interested in legal or financial planning and long-term care, but only 17 per cent and 25 per cent respectively of people with Alzheimer s disease were interested in these. These differences may represent the issues that are more likely to be dealt with by carers. However, this situation may be changing with the introduction of the Mental Capacity Act and the opportunities it provides for people with dementia to set out their wishes regarding care and support in advance. Two issues in the list of ten most important issues to people with dementia did not appear on carers list. These were: participation in research studies for memory loss support groups for people with memory loss. 2.1.4 The information needs of carers and people with dementia both require attention The importance of not neglecting the particular needs of people with dementia was raised in the working group meeting. Individuals may wish to access services, for example counselling, to help them come to terms with their diagnosis. These needs may be lost if the focus is on the needs of the carer who may be the dominant voice in discussions with health and social care professionals. It is vital to recognise that people with dementia may have different information needs and to ensure that these needs are not subsumed by those of carers. However, information providing organisations pointed out that while carers may be calling to ask for information relating to the person with dementia, it is important that they are made aware of support that may be available to them as carers. There is little evidence around the information needs of particular groups of people with dementia. For example, people from different black and minority ethnic communities or individuals with learning disabilities and communication difficulties. This is an area where further research would be helpful.

Findings 11 2.2 What format do people prefer? 2.2.1 Printed information is preferred It was made clear from a range of evidence sources that information should be made available in a range of formats to meet people s different needs and preferences. The evidence suggests that many people with dementia and carers have a preference for printed information. It allows people to go over information several times and go back to it as and when required. However, some individuals expressed a preference for different formats. It was also highlighted by the working group that people might express a preference for printed information because this is what they have experienced. If they were to try a different format, for example DVD, they may find they prefer this. Think Public found that people with dementia expressed that having a conversation backed up by some printed information was a useful way of receiving information. The questionnaire of people with dementia and carers asked in which format people liked to receive information. They could tick more than one answer. Results were as follows: Table 2: Preferred format for receiving information Format respondents preference (per cent) printed information 82 face to face 65 Internet 23 telephone 11 DVD or video 6 CD-rom 2 2.2.2 Internet only information is insufficient The evidence clearly demonstrated that an Internet only information resource would be insufficient to meet the information needs of people with dementia and their carers. It would risk excluding the significant numbers of people who do not have regular access to the Internet. Furthermore, it may be that the Internet only information sources are particularly difficult for people with dementia to access if the format or navigation of the site is inappropriate for that group.

12 The information needs of people with dementia and carers In 2009, 18.3 million households in the UK (70 per cent) had Internet access. This is an increase of just under 2 million households (11 per cent) since 2007. 3 However, large discrepancies in Internet usage between the age groups remain. Importantly, 64 per cent of people aged over 65 years of age reported that they had never used the Internet. Furthermore, an IPSOS survey commissioned by Ofcom in 2009 found that people aged 75 years and over were less likely to have the Internet or intend to get it. Of people aged over 75 years, 73 per cent said they would not want the Internet even if it were free. 4 Dementia Web (contacted as part of the market survey) explained in a telephone interview that many older people asked that information provided on their website was printed and posted to them. In addition, there are differences in the proportion of people accessing the Internet depending on their level of qualification (Office of National Statistics 2009). 3 An Internet only information service risks failing to meet the needs of those with few or no qualifications. However, it is important to note that access to different technologies is changing and the older generation will soon comprise those used to obtaining information online. ONS (2009) reports that the largest increase in the proportion of those accessing the Internet was in the oldest age group (65 plus). 3 Access by those aged 65 plus increased proportionally by 15 per cent, compared with an increase of 3 per cent for the 16 24 age group. Therefore the most appropriate format should be kept under review. 2.2.3 Information must be accessible to people with dementia Ensuring information is available in a format accessible to people with dementia is vital. Respondents to the telephone interviews of information providing organisations highlighted that the most appropriate format for information targeted at people with dementia may change as dementia progresses. Working group members pointed out that providing written information that is accessible to people in different stages of dementia is a challenge. Careful drafting and design, that involves people with dementia, is required to help address this. The importance of involving people with dementia in the development of information was highlighted by Age Concern Mental Health network. They explained that it is difficult for people giving information to know enough of what people living with dementia may think and experience to be able to sufficiently empathise and know what would be most helpful and when.

Findings 13 Think Public wrote that people with dementia reported finding large amounts of text confusing. People were much more positive about shorter pieces of information and leaflets. 2.3 Are people getting the information that they need? Interviewees from organisations providing information about dementia expressed the view that there is a wide range of information available. This includes factsheets, factual books, books explaining people s experiences, DVDs and leaflets. Commonly cited sources of useful dementia specific information included Alzheimer s Society factsheets and other publications, and the Department of Health Who Cares booklet. In addition, many people mentioned sources of non-dementia specific information such as Age Concern s benefits information and Carers UK s information and support. However, the National Dementia Strategy highlights that providing an individually tailored comprehensive package of high-quality information is a challenge. The evidence reflects this. Over one in four people with dementia and carers (27.6 per cent) reported in the questionnaire that getting hold of the information they needed was either quite difficult or very difficult. This figure may be higher amongst people who are not in touch with Alzheimer s Society. Interviews held with carers as part of the Database of Individual Patient Experience (DIPEx) research identified that they required practical information and could not understand why no-one had told them what they needed to know at an earlier stage. 5 2.4 What are the barriers to gathering information? The evidence suggests that despite the range of information that is available, people with dementia and carers are still finding it difficult to get the information they need. There are a number of reasons for this. The questionnaire provided a list of potential barriers to gathering information and respondents ticked those that they had faced. The results were as follows (people could tick more than one challenge):

14 The information needs of people with dementia and carers Table 3: If you found gathering information on dementia difficult, why? Difficulty experienced by respondents (per cent) Not knowing what information to look for 166 (48) Not knowing where to go to get the information you need 163 (48) Not being told about something until it is too late 114 (33) Health and/or social care professionals have not been able to provide the information you need, or tell you where you can get it 106 (31) The information you have received hasn t answered your questions 71 (21) It takes too long to actually receive the information you need 68 (20) The information was not in a format that you could use 27 (10) Other 106 (31) 2.4.1 Gaps in the information available A major finding of the research was that information targeted at people with dementia represents a major gap in current provision of information. Much available information is targeted at carers and is in a format inaccessible to people with dementia. In particular, there is a lack of information that addresses people with dementia s emotional needs. For example, people may value information on coming to terms with a diagnosis or coping with changing personal relationships. In addition, there is a lack of information that addresses the needs of those from different cultural groups. Finally, access to comprehensive information about local services is patchy. 2.4.2 Lack of proactive information provision A failure to proactively provide people with information appears to be a significant barrier. There is some low level work going on, for example the Worried About Your Memory campaign, which places information in GP surgeries and pharmacies. However, nearly half of the questionnaire respondents (48 per cent) reported that not knowing what information to look for was a barrier to getting the information they needed. In addition one third reported not being told about something until it is too late. Working group members also highlighted the lack of information on potential problems that they should look out for, particularly physical health issues. This seems to reflect the generally reactive nature of information provision. The example was given of pressure sores. The individual caring for his wife at home was not made aware that pressure sores were a potential risk or of how to

Findings 15 reduce that risk or spot the early signs. A pressure sore did develop and took intensive support from district nurses to treat. That could have been avoided if information on pressure sores had been provided in a timely way. Living with dementia presents a wide range of challenges and there is also a complex range of support and financial and legal issues to deal with. For many individuals it will be the first time they have to deal with these things and cannot be expected to know what they need to ask about. Given the emotional and physical toll placed on people by dementia, it is particularly important that the provision of the necessary information does not depend on people adopting a pro-active approach that requires an unrealistic level of time and energy. 2.4.3 Lack of coordination between the range of services supporting people with dementia and carers People with dementia will receive a range of services from health and social care. Different services are responsible for providing different pieces of information. It is confusing for people to know which sector to approach for a particular piece of information. Nearly half of respondents to the questionnaire reported that not knowing where to go to get the information you need was a barrier to receiving information. Carers interviewed by the DIPEx group reported that they were confused about the divisions between statutory authorities and the roles and responsibilities of staff and did not know where to turn for advice. 5 The range of professionals involved accompanied by the range of information that people may require increases the risk of responsibility for providing particular information falling between the gaps. No one professional has responsibility for providing a comprehensive set of dementia information and it may be that workers do not have knowledge of issues outside their remit. This may change with the development of the dementia adviser service. The risk of gaps in information provision is exacerbated where there is poor coordination and planning between services, regarding how to ensure people with dementia get the information they need. This problem was identified by the Picker Institute s study of how people, with conditions other than dementia, found out about locally available services and how to access them. 6 They found health professionals did not systematically provide patients with information. It was noted by Age Concern s Mental Health Network that there is a postcode lottery in terms of whether or not there is a co-ordinated approach locally to information deployment and pathway signposting. This was noted to be particularly pertinent in terms of resources for carers.

16 The information needs of people with dementia and carers 2.4.4 The ability of staff to identify information needs and respond effectively Nearly one in three carers and people with dementia (30.9 per cent) reported in our questionnaire that health and/or social care professionals were not able to provide the information needed, or tell them where to get it. As noted in 2.4.3, a range of professionals are involved in supporting people with dementia and they may not be able to provide information on issues outside of their remit. It is important that staff receive appropriate training, so that they are able to effectively signpost people to sources of information. In addition, the evidence points to the importance of understanding when people are ready to receive particular information. When and how information is provided is as important as what information is provided. Receiving a diagnosis of dementia is often a traumatic event and individuals may take time to come to terms with the diagnosis. Professionals must be able to assess when people are emotionally ready to accept certain pieces of information. They should also understand how much information to provide. If people receive too much information in one go, they may be deterred from reading it. Also, if information is irrelevant to an individual s situation at the time it is received, it may be disregarded and not returned to. 2.5 Additional considerations 2.5.1 Support alongside information provision Respondents from information providing organisations emphasised the value of providing support alongside written information. The Age Concern Mental Health Network report that people like to talk to someone about the information they have been given in order to relate it to their own circumstances. They also see emotional support to both handle the information they receive and to manage particular symptoms as very important. 2.5.2 Carers of people in care homes Fortinsky and Hathaway (1990) found that carers of people with dementia living in care homes were still interested in receiving educational material information on Alzheimer s disease. 7 It is important to ensure this group of carers have access to information, particularly given they may be less likely to be in contact with information providing services such as memory clinics.

Findings 17 2.5.3 Information must be relevant to people s experience It was emphasised that information must be relevant to people s lived experience. It must acknowledge that while policies are in place regarding the support that should be available, these policies may not be fully implemented. Action plans that enable people to respond to their experiences are very helpful. Examples of situations where an action plan may be helpful include when a GP refuses to discuss the person with dementia s condition with a family carer, or a carer not being able to access an assessment of their own needs. 2.5.4 Information provision should be got right from the start Carers who had trouble getting access to information when they initially tried were less likely to attempt to get information at a later date. It is therefore vital to ensure good access to information when people first require it. 2.5.5 Information needs change over time The evidence suggests that information needs change over time. The DIPEx research found initially people were interested in information about dementia, but then wanted information on how to be a carer. Other research found while the majority of carers did not want information on services at the time of diagnosis, some did. 8 It is likely that what people want will depend on their circumstances, for example some people may not be in need of support services at the time of diagnosis, but others will. This highlights the importance of people being prompted about issues and also knowing where to go to get the information they need, at the time they need it.

3 Conclusions and recommendations 3.1 Conclusions The following key points emerge from the evidence: 1 Information provision must be proactive. Currently there is too much reliance on people with dementia and carers seeking out information for themselves. The result is that people do not receive the information they need because they do not know what to ask for. 2 There should be effective coordination between health and social care staff with responsibilities for providing information. This will ensure there are no gaps or unhelpful duplication. 3 Staff must be aware of their own responsibilities regarding information provision. They should also be able to signpost people with dementia and their carers to additional sources. Responsibilities will vary between local areas. 4 Staff should receive training on how to assess and understand the information needs of people with dementia. This should focus on how to tailor information provision depending on a person s emotional acceptance of their condition and their personal preferences in terms of information gathering. 5 The development of an information set must carefully consider the needs of carers and people with dementia. This will ensure one does not subsume the other. 6 Currently, information targeted to people with dementia is a significant gap. Information developed to address this gap must be carefully drafted and designed to ensure it is accessible and helpful to people with dementia. The involvement of people with dementia is therefore vital. 7 Understanding of the information needs of people with dementia and carers for particular groups of the population needs to improve.

Conclusions and recommendations 19 8 A wide range of factors affect whether people with dementia and their carers have the information they need. These include public awareness of dementia and its impact on people s lives. Also, the level of GP knowledge and awareness of dementia. In fact, the very low rates of diagnosis act as perhaps the most significant barrier to people with dementia getting hold of the information they need. Low diagnosis rates will be addressed by work to implement other objectives within the strategy and we are hopeful that this work will help to take forward objective 3. 3.2 Recommendations Based on the above conclusions, Alzheimer s Society recommends the following: 3.2.1 National provision of dementia information 3.2.1.1 Short term priorities A) The Department of Health booklet Who cares should be updated and re-printed. The benefits of this booklet are: It covers the core issues upon which people want information. It can signpost people to sources of further information. Updating a highly regarded existing booklet is a more efficient exercise than developing a new resource. The updating can include the involvement of carers and people with dementia. This type of booklet can cover a wide range of topics, some briefly and others in more depth. People can dip in and out as they need to and it is therefore an effective way of addressing people s differing information needs. The booklet can also prompt about issues they may not have considered. B) A booklet should be developed that addresses the information needs of people with dementia. As well as information on the condition and potential sources of support, this booklet should cover how to handle fears and anxieties about being diagnosed with dementia, coping with the stigma still connected with dementia, how to tell other people that you have a diagnosis of dementia and how to cope with worries about losing control.

20 The information needs of people with dementia and carers This should be written and designed in collaboration with people with dementia. Examples of existing publications such as Facing dementia and Alzheimer s Society publications should inform the development of the booklet. C) These booklets should be given out proactively, so that every carer and person with dementia has a core set of information to which they can refer for advice and support and also seek sources of further information. The most appropriate trigger point for giving this booklet will depend on local arrangements and individual circumstances, but services should aim to ensure everyone has a copy of these booklets within a reasonable timeframe following diagnosis. 3.2.1.2 Longer-term work D) Work should be carried out to better understand and meet the information needs of particular groups of people with dementia, for example the travelling community and people from black and minority ethnic groups. E) Work is needed on a consideration of the training needs of staff regarding how to assess people s information needs and provide information in an effective and sensitive way. 3.2.2 Local information provision F) Local statutory health and social care services need to work together to ensure they provide clear and comprehensive information about local services for people with dementia and carers. Again, this information should be provided on a proactive basis, with clear signposting on where to find further information. Support in developing this information that could be provided on a national basis includes: Gathering and disseminating examples of good practice in local service information, via the Department of Health s Dementia information portal (www.dementia.dh.gov.uk) Developing toolkits for local authorities and PCTs to collect information about local services across the spectrum of the statutory, voluntary and independent sectors and presenting that information in a format accessible to people with dementia and carers.

Conclusions and recommendations 21 3.2.3 Emergency support G) There is a need for people with dementia and carers to have access to emergency advice and information. Access to local 24-hour crisis support varies. NHS Direct provides a 24-hour telephone advice line, but this is not dementia specific. Further work should explore the most appropriate method of providing this support.

References 1 Wald C et al (2003) What to tell dementia caregivers the rule of threes. International Journal of Geriatric Psychiatry. 18: 313 7 2 Edelman P et al (2006) Information and service needs of persons with Alzheimer s disease and their family caregivers living in rural communities. American Journal of Alzheimer s Disease and Other dementias. 21 (4): 226 33 3 Office of National Statistics (2009) www.statistics.gov.uk/pdfdir/iahi0809.pdf 4 Ofcom (2009) www.ofcom.org.uk/research/telecoms/reports/bbresearch/ bbathome.pdf 5 DIPEx (2005) Carers of people with dementia: looking for information. At www.healthtalkonline.org/nerves_and_brain/carers_of_people_with_dementia/topic/2113 /topiclist (last accessed June 2010) 6 Swain D, Ellins J, Coulter A et al (2007) Accessing information about health and social care services. Picker Institute 7 Fortinsky R and Hathaway T (1990) Information and service needs among active and former family caregivers of persons with Alzheimer s disease. The Gerontologist 30 (5): 604 9 8 Beisecker AE (1997) Perceptions of family caregivers of persons with Alzheimer s disease: communication with physicians. American Journal of Alzheimer s Disease. 12 (2): 73 83

Appendix 1 Questionnaire Improving information on dementia for people with dementia and carers People with dementia and their carers need information to help them make the most of their lives. This information might explain what dementia is, how to cope with the symptoms and/or what support services are available. This questionnaire is to find out about what information people with dementia and carers want and how they prefer to receive that information. The results will help the Department of Health understand how to achieve the following objective of the National Dementia Strategy for England Good-quality information for those with diagnosed dementia and their carers. Information requirements for people who have yet to receive a diagnosis are being addressed separately. All information will be treated confidentially. If you have any questions about this questionnaire please call Samantha Sharp on 020 7423 3683 or email ssharp@alzheimers.org.uk Please return your completed questionnaire in the prepaid envelope by Friday 27th November 2009. Thank you for sharing your views. About yourself 1. Please tick the one that best describes you: I am a person with dementia I am a carer (or former carer) 2. Please tell us the age of the person with dementia: 40 64 65 69 70 79 80+ 3. Please tell us the age of the carer: Under 40 40 64 65 69 70 79 80+ 4. How long ago did the person find out they had dementia? Less than six months ago Between six months and a year ago Between one and three years ago More than three years ago 5. Where does the person with dementia live? In their own home or the family carer s home In a care home I am a former carer

6. What is your ethnic group? Choose one section from A to E, then tick the appropriate box to indicate your cultural background A White British Irish Any other White background, please write in:... B Mixed White and Black Caribbean White and Black African White and Asian Any other Mixed background, please write in... C Asian or Asian British Indian Pakistani Bangladeshi Any other Asian background, please write in:... D Black or Black British African Caribbean Any other Black background, please write in:... E Chinese or other ethnic group Chinese Any other, please write in:... 7. How would you rate your experience of getting hold of information about dementia? (once you have received the diagnosis) Very easy Quite easy Neither easy nor difficult, just OK Quite difficult Very difficult 8. If you found gathering information on dementia difficult, why? (if you found it easy please go to question 9). Please tick all that apply Not knowing what information to look for Not knowing where to go to get the information you need Not being told about something until it is too late Health and/or social care professionals have not been able to provide the information you need, or tell you where you can get it It takes too long to actually receive the information you need The information you have received hasn t answered your questions The information was not in a format that you could use (eg only internet based) Other (please state)...

9. Where have you gathered information about dementia? Please tick all that apply A health care professional A social care professional NHS helpline or website (eg NHS direct, local NHS website) Local authority/social services department helpline or website A voluntary organisation (eg Carers UK, Alzheimer s Society, Age Concern) The media (newspapers, magazines etc) Family and/or friends Other carers or people with dementia Books from the library or bookshop Other (please state)... 10. Where have you got the most useful information about dementia? A health care professional A social care professional NHS helpline or website (eg NHS direct, local NHS website) Local authority/social services department helpline or website A voluntary organisation (eg Carers UK, Alzheimer s Society, Age Concern) The media (newspapers, magazines etc) Family and/or friends Other carers or people with dementia Books from the library or bookshop Other (please state)... 11. Please can you tell us about what sort of information you have found most useful? What was it about and why was it so helpful?......... 12. Do you prefer to receive information from: Local organisations National organisations A mixture It does not matter whether it is a local or national organisation Other (please state)... 13. In what format do you prefer to receive information about dementia? (please tick all that apply): Telephone Face to face discussion Printed information (eg leaflets, booklets, etc) The internet CD-roms DVDs or videos Other (please state)...

14. Is there any particular piece of information you wish you had found out earlier?... 15. What information topics should be provided? i. Please indicate which topics you have received information about. ii. Please rate the importance of each topic. Information Topic i. Please tick if you have received information on this topic ii. How important is information on this topic? Please circle the appropriate number. 1 not at all important to 5 very important What is dementia - basic medical information The symptoms and progress of dementia and its subtypes Drug treatments for dementia and its subtypes Research - latest research and getting involved Tips for day-to day life with dementia Physical health problems people with dementia may experience What local services are available and how to access them The responsibilities of the different health and social care professionals/organisations 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 Legal financial and benefits information Planning for the future - advance decision making Emotional issues - maintaining relationships/ effects of stress on carers Behavioural and psychological symptoms What to do in a crisis Other (please state)... 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 That s all thank you for your help. Please tick here if you would be happy for us to contact you for further information. Name Address Postcode Email Telephone

Appendix 2 Organisations contacted in the market survey Age Concern/Help the Aged Alzheimer s Research Trust Alzheimer s Society Carers UK Citizens Advice Bureau CJD support network Cornwall County Council Counsel and Care Crossroads Dementia Web Downs Syndrome Association For Dementia Huntingdon s disease association Lewy Body Association MIND NHS choices NHS Direct Patient UK Pick s disease support group PSP association Royal College of Psychiatrists

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