What do people with dementia and their carers want to know about neuroimaging for dementia?

Abstract

Neuroimaging forms an important part of dementia diagnosis. Provision of information on neuroimaging to people with dementia and their carers may aid understanding of the pathological, physiological and psychosocial changes of the disease, and increase understanding of symptoms. This qualitative study aimed to investigate participants’ knowledge of the dementia diagnosis pathway, their understanding of neuroimaging and its use in diagnosis, and to determine content requirements for a website providing neuroimaging information. Structured interviews and a focus group were conducted with carers and people with dementia. The findings demonstrate an unmet need for information on neuroimaging both before and after the examination. Carers were keen to know about neuroimaging at a practical and technical level to help avoid diagnosis denial. People with dementia requested greater information, but with a caveat to avoid overwhelming detail, and were less likely to favour an Internet resource.

Keywords

carers dementia diagnosis focus groups neuroimaging

Introduction

The number of dementia sufferers is expected to increase due to the aging structure of the world’s population; it is estimated that by 2050, 115.4 million people worldwide will be living with dementia (Prince et al., 2013). Neuroimaging such as magnetic resonance imaging (MRI) or computed tomography (CT) forms an important part of dementia diagnosis to exclude other pathology, recognise vascular lesions and distinguish between dementia subtypes (Filippi, Agosta, Barkhof, Dubois, & Fox, 2012).

Within the area of neuroimaging, many advances have been made on its potential for diagnosing dementia; however, no research has examined whether the information provided to people with dementia and carers has kept pace. A generally low level of understanding regarding radiological examinations has been documented. Studies of patients attending for CT scans identified knowledge gaps in important areas for patient comfort such as breathing during the procedure (Mathers, Chesson, & McKenzie, 2009). In addition to this, people with dementia represent a population with unique requirements due to some of the associated symptoms, such as language impairment and disorientation (NICE, 2014).

These information deficiencies are not limited to neuroimaging; studies have also suggested a dearth of general dementia information provision at diagnosis and in the following period. A systematic review of family caregivers found perceptions of insufficient information provision at diagnosis, resulting in a negative experience (Werner, Karnieli-Miller, & Eidelman, 2013); another review found deficient communication resulted in some carers being uncertain about whether a definitive diagnosis of dementia had been made (Bruce & Paterson, 2000). Post-diagnosis, a similar picture is seen when many patients want to know more about the disease itself (Werner et al., 2013), with one questionnaire of family members finding that only 1.8% felt they received too much information (Holroyd, Turnbull, & Wolf, 2002). This suggests current communication approaches are less than effective and not delivering the optimum benefit.

This study aims to identify the needs relating to neuroimaging information by firstly discerning current understanding of neuroimaging amongst people with dementia and their carers to identify knowledge gaps, determining common routes of information provision and sourcing, the content they would like to access on an Internet-based resource and how this should be presented. This research was conducted as part of a larger project aiming to increase awareness, education and training in dementia through neuroimaging. In this ever emerging era of technology and the Internet, we now have an opportunity to provide accurate, relevant information to people with dementia and their carers via an accessible medium. This may help to dismiss any misconceptions regarding neuroimaging, and dementia as a whole.

Methods

A qualitative approach was chosen to determine the reasons why neuroimaging information would benefit people with dementia and carers, how the required information could be presented and, overall, to gain the perspective of the participant (Bryman, 2012). Data were obtained through a focus group and structured interviews. The project received full institutional approval from the University College Dublin Human Research Ethics Committee.

Carers were initially recruited through a national care facility, however, due to a low response rate, carers were also recruited through the social media website of a prominent dementia charity and the project website. People with dementia were recruited through an advocacy group. Non-probability sampling, specifically snowball sampling, was used in this research.

The inclusion criteria for people with dementia were the presence of early onset disease, and the ability to give consent. For carers, the criteria was identifying themselves as having a carer role, aligning with the definition of providing care or assistance to those who are ill or need help with personal activities of daily living, without receiving pay (O’Reilly, Connolly, Rosato, & Patterson, 2008). For people with dementia, the presence of a co-morbid psychiatric condition was exclusion criteria. There were no exclusion criteria for carers.

A pilot of the focus group was conducted to evaluate aspects such as ease of comprehension of discussion points, and potential additional topics. This resulted in changes to the structure of the focus group, the introduction of additional questions and altering the language used, that proved beneficial for the subsequent research.

It was initially intended to conduct a focus group for carers, however, due to carer availability this was not feasible. Individual structured interviews were subsequently chosen while a focus group was conducted with the cohort of people with dementia. Each structured interview and focus group was scheduled for an hour. To ensure continuity between the two different data gathering methods and aid analysis, a list of discussion topics was prepared; however should an alternative, relevant viewpoint arise, there was a potential for discussion. The purpose of the research and importance of the participants’ contribution was reiterated at the onset. A clear structure to the data gathering was required to retain focus and avoid participant fatigue. A moderator was present to aid the interviewer in areas such as observing body language and, in the focus group, to note the order of speakers. In the focus group, a natural flow of discussion was the desired process, however, in order to obtain a wide viewpoint, occasionally reticent participants were asked if they wished to contribute.

The structured interviews and focus group were audio recorded, anonymised, transcribed verbatim and analysed using thematic analysis. A sample of text was independently analysed by a second researcher, and the themes and allocation were found to be in agreement.

Demographic details of carers were captured and analysed, due to the potential for some aspects to influence findings. Such an example is a participant’s education level; it has been shown that the likelihood of searching for health information on the internet increases with educational level increases (Rice, 2006).

Three topics were discussed:

Knowledge and experience of dementia diagnosis pathway – describing their experience with diagnosis, the information provided and their preferred form of information.

Understanding of use of neuroimaging in dementia and information requirements – discussing self sourcing of neuroimaging information, questions they would have asked before and after a neuroimaging procedure, and their satisfaction with the information provided.

Use of technology as an information source – outlining their preferred features and content of a neuroimaging website.

Findings

Sixteen participants took part in the research, eight carers via structured interviews and eight people with dementia via a focus group. The gender profile of carers was seven females and one male. The range of ages of the carers was 29–61 years old (mean age of 46). The highest education level achieved by a majority of carers was Third Level – Non Degree. The average length of time since dementia diagnosis of their loved one was 4.5 years, and greater than half identified the stage of dementia they have experience with as advanced. The gender profile of people with dementia was five females and three males with all being over 60 years old.

The references after the quotes anonymously attribute them to each participant; the letters refer to their status as a carer (C) or person with dementia (P), the numbers immediately following the letters reference the geographic location of their sample, and the Roman numerals refer to individuals within that group.

Themes from carer structured interviews

Minimal understanding of neuroimaging and its role in dementia diagnosis

Carers were unaware that neuroimaging could be used to diagnose dementia and what it was being used for at diagnosis. Many spoke of confusion:

“I didn’t know what they were for I thought they were just general parts…I didn’t realise there were brain scans that could diagnose dementia.” (C1v)

A majority felt that information regarding the neuroimaging procedure was not readily available to them: “Nothing has been offered or explained … I tried looking up stuff on the internet but it didn’t make any sense to me whatsoever” (C2iii). This had generated apprehension regarding neuroimaging on behalf of their loved one, in part relating to misconceptions:

“It can be quite scary, like even the thought of a brain scan conjures up all sort of … images of wires” (C2ii)

A greater level of information provision was requested

Carers information requests ranged across the spectrum of possible information provision, from the high-level, such as what the examination is looking for, to specific, practical aspects such as prior food and liquid intake: “What shows up on a brain scan for dementia? Are there lesions on the brain?” (C1iv). Carers saw a direct benefit to providing this information to them and their loved one as it may help them to avoid diagnosis denial due to the tangible evidence. This was expressed by one carer in a description of her father’s response to his diagnosis:

“He was … even sort of denying you know what the doctors had said. Maybe it’s something else. Whereas if he had been given physical evidence … ” (C1ii)

Neuroimaging information may also assist carers in relating symptoms to neurological changes. They felt it would provide a connection between symptoms and the pathological changes that is currently missing: “What kind of person you are actually taking care of as regards to the brain scan you have seen” (C1iii). Carers felt this would increase their capacity to act as an advocate and provide ownership of the diagnosis: “Because I’m going to be the caregiver so I need to know what I’m dealing with” (C1iv).

Website content should include dementia type specific information, delivered with a personal, professional approach

Carers’ interest in information related only to the specific type of dementia they deal with:

“You could just go to that and that’s what affects you … Because you only want to know about what affects you and your family” (C1i)

Further elaboration of website content requests revealed a preference for incorporating a personal tone and approach, to create a sense of support: “So I feel like somebody has been there before me” (C1i). Carers also highlighted that a professional association is essential – information must be provided by someone qualified to do so: “You need to be sure they are reliable, verifiable … It’s a bit of a minefield” (C2i).

Website multimedia requests related to information for before and after the neuroimaging examination

Carers wished to utilise multimedia resources in order to maximise their understanding of neuroimaging. One such example would be a virtual tour of the MRI suite and procedure to allow preparation for the procedure and reduce anxiety:

“I’d like to know what the actual scan involves and what it involves going into the place nearly like a walk through … so that I can actually guide her through” (C1iv)

Carers also unanimously wished to compare neuroimaging from healthy and dementia affected brains to allow visualisation of changes:

“To do a comparison between what’s considered to be a normal brain scan and then someone with dementia’s scan to show the differences” (C2ii)

All carers felt that personal testimonials of people with dementia who had experienced neuroimaging examinations would be beneficial and provide reassurance:

“To know that someone had been through it and come out the other side and … they were able to sit and talk to me about it. I would find comfort in that alone” (C2ii)

However, carers emphasised that content must be appropriate in terms of gender, age and degree of cognitive impairment:

“But I’d have to tailor it to what I would feel that my mother would be like … Maybe a male, a female version, or someone in and around the same age group, or the same level-ish” (C2iii)

Themes from the focus group with people with dementia

Insufficient neuroimaging information provision

People with dementia were dissatisfied with what they were told regarding the procedure: “As far as I can remember we weren’t told a thing” (P1vi). Many expressed the concern and anxiety they had experienced at the time, as basic information, such as the purpose of the procedure, was not discussed with them: “Why did I … need a brain scan … ”(P1iv).

An interest in further neuroimaging information at an appropriate level

People with dementia requested additional neuroimaging information: “If there are many forms of brain scans I’d like to know about it” (P1iii). They wished to have further elaboration on the base-line information they had received: “But a little more than we are usually getting … that’s what I want” (P1ii). However, it was evident from this sample that any additional information must avoid excessive detail:

“It’d be easy to question too much, and look for too many explanations. On matters that you wouldn’t be fit to grapple with” (P1iii)

Low favourability for Internet-based resources

People with dementia had a low level of interest in an Internet-based resource for their personal use: “I’m not particularly interested in computers or anything like that” (P1ii). Many expressed their frustration at using computers and the Internet whilst expressing their preference for booklets or information meetings, however, a majority were keen to highlight that others such as family members are accessing the Internet for information on their behalf: “My daughters have all gone onto the internet … they’re looking into that” (P1vii).

Discussion

These findings suggest that the role of neuroimaging in diagnosing dementia is not being sufficiently explained. Providing neuroimaging information, with a focus on the specific needs of the person with dementia and their carers, may lead to increased understanding of what the procedure entails and thus reduce anxiety, increase compliance and image quality.

It may also provide greater benefits such as enhancing understanding of how dementia is diagnosed and thus on the disease itself. Uncertainty regarding the diagnosis of dementia has previously been reported amongst carers with many unsure whether a diagnosis had been made; as has uncertainty regarding the differences between dementia and age-related memory changes (Bruce & Paterson, 2000). Providing neuroimaging information regarding diagnosis may also help avoid diagnosis denial as it gives tangible evidence that dementia extends beyond the normal ageing process and is not a reversible state. A similar effect was seen for general diagnostic results where a study found that a detailed discussion helped patients see the diagnosis as valid (Smith & Beattie, 2001).

This study found that carers are particularly interested in a personalised online resource. Carers were keen to access information that only related to the subtype and stage of dementia they had experience with. The request for personalised information to stage may relate to patient concerns about providing too much detail for those at mild or moderate stages and the potential for exposure to fearful information (Larner, 2003).

Carers were also keen that content be relatable, such as in ‘personal experiences’ information, the user should be able to associate with the subject, for example in terms of age or gender. This high degree of personalisation was also seen in literature (Entwistle et al., 2011), however, a lack of personalised information in dementia has been highlighted as an issue (Lauriks, Reinersmann, van der Roest, Meiland, & Davies, 2007) suggesting it is an important area to target. Some online initiatives have incorporated tailored information into their model; The Caregivers Friend: Dealing with Dementia online intervention emphasised the importance of individualising the information to each user via completing website questions (Beauchamp, Irvine, Seeley, & Johnson, 2005). However, depending on the background of the user, determination of what level of personalised information is sufficient can be difficult and carers’ information needs have been shown to change over time (Powell et al., 2010). The request for personalised information may be related to the nature of dementia, due to the distinct subtypes with varying symptoms and different management approaches, demonstrating that dementia is a distinctly personal disease.

Carers expressed concern about the quality of currently available online dementia resources. This issue was also seen in a survey of physicians where many felt that the online dementia resources accessed by patients and their families were not an ideal choice (Galvin, Meuser, Boise, & Connell, 2011). An evaluation of Alzheimer’s disease websites for carers also discussed the issue of poor quality information such as omission of important details (Bouchier & Bath, 2003). This indicates an opportunity to develop a resource which delivers quality information in a format which ensures carers of its reliability, however, when aiming to develop a high-quality online resource, variations in the definition of quality amongst different users must be considered. Areas of interest to the carers which should be taken into account include: qualification of providers and the potential for bias (Anderson, Katherina, & Joseph, 2009). Highlighting the quality of the information is essential to increase confidence in an online resource. Suggestions of how to achieve this include explaining the health care professional source of information (Sonnenberg, 1997).

This research highlights important points about the viability of an online dementia resource. All carers expressed interest in an online resource, however, as the majority were recruited through social media, this suggests an Internet literate sample and contrasting views have been seen previously with one study finding that only 4% of carers wanted to receive dementia information from electronic media (Wald, Fahy, Walker, & Livingston, 2003). Another study found a combination of both was desirable with an Internet-based resource favoured, but carers also wished to have elements available in print format (Lewis, Hobday, & Hepburn, 2010). The age of carers in this sample must also be considered, as studies have found a relationship between age and interest in a computer-based resource (Colantonio, Cohen, & Pon, 2001). Further research may be warranted across a larger, heterogeneous sample.

The people with dementia in this sample did not have a means to access an Internet-based resource and did not favour this for sourcing information. This finding aligns with previous findings that Internet searches for dementia information amongst patients are low (Larner, 2003). This suggests that traditional, written resources would provide the greatest reach, however, it was mentioned that others access the Internet on their behalf, as was seen in literature (Larner, 2003). This suggests the role for a section on an Internet resource where appropriate information is available to pass on to patients.

This study was not without limitations. Recruiting patients and carers via traditional, direct contact methods proved challenging. Difficulties in recruiting older people for research has been reported with cognitive impairment being a contributing factor (Ridda, MacIntyre, Lindley, & Tan, 2010). It was also not possible to conduct a focus group with carers, therefore the separate data collection methods may have different contributing factors such as group dynamics.

There are potential sources of bias associated with this study. It is possible that a reduced ability to recall information and recall bias may have affected the information provided. Selection bias must also be considered in the case of the carers, as those who participated are non-random and it could be suggested they are highly motivated in finding out more about dementia and its diagnosis. There was also homogeneity amongst the carers with a majority of the participants being female and in the age group 45–54 years. The introduction of a larger number of male participants or those of a different age group may have produced an alternative conclusion.

As healthcare professionals, we have a responsibility to patients and carers to deliver medical information in a format that is accessible and with suitable, accurate content. As the internet continues to gather pace as a resource for this, we must ensure through consultation that we are meeting patient’s requirements. This research will inform online resource development for this cohort, and allow us to investigate other methods of information provision for those who do not favour this medium.

Conclusion

This study shows there is an unmet need for neuroimaging information both before and after an examination. Carers are keen to know about neuroimaging at a practical and technical level to increase understanding of the disease and its symptoms and to help with the acceptance of a diagnosis. In the current study, people with dementia would like more neuroimaging information, but expressed that this information should not be excessive. They also indicated that they were less likely to favour Internet-based resources. This study has identified a number of specifications for resources for neuroimaging in dementia that will benefit people with dementia and their carers alike.

Footnotes

Acknowledgements

The authors are extremely grateful to the people with dementia and carers who supported this work and also acknowledge the contribution of Ms. Belinda Grehan.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Part-funded by the European Regional Development Fund through the INTERREG 4A Ireland Wales Programme 2007-13.

Author Biographies

Ms Hannah Featherstone is a penultimate year Graduate Entry Medicine student in the University College Dublin School of Medicine and Medical Science and has a particular interest in neurological and radiological aspects of medicine. She was awarded a BSc (Hons) Radiation Therapy in 2008 in Trinity College Dublin.

Dr Marie-Louise Butler is a diagnostic imaging lecturer and researcher in the School of Medicine and Medical Science in University College Dublin. She is involved in a number of teaching disciplines and research areas, including collaborations with various professions and international bodies. Her research interests include medical education, implementation of research in clinical practice and image perception.

Dr Aurelia Ciblis is a post-doctoral research fellow in the University College Dublin School of Medicine and Medical Science. She was awarded a BA (Hons) Psychology in 2007 in UCD. In 2012, she successfully completed her PhD programme in the UCD School of Psychology which investigated the effectiveness of a cognitive-behavioural therapy approach to the treatment of severely obese clients. Her primary research interests are health psychology and clinical psychology.

Professor Arun L Bokde has an appointment as Science Foundation Ireland Stokes lecturer in Biostatistical Imaging in the Discipline of Psychiatry, School of Medicine and Trinity College Institute of Neuroscience, Trinity College Dublin. His main research interest is in understanding how large scale neural networks in the brain support cognitive function and how breakdown in such networks lead to cognitive impairment, on which he has published an extensive volume of research.

Dr Paul G Mullins is currently serving as director of the Bangor neuroimaging unit, senior MRI physicist, and senior lecturer in the Department of Psychology at Bangor University, Wales. He collaborates with researchers from the College of Health and Behavioural Sciences on neuroimaging study design, data acquisition and processing and utilisation of research resources. He is actively involved in research using magnetic resonance spectroscopy to measure neurochemistry in central nervous system function and disorders.

Dr Jonathan P McNulty is Head of Subject – Radiography and Head of Educational Development in the School of Medicine and Medical Science in University College Dublin. He is a University Fellow in Teaching and Academic Development and is currently a board member, with education and research responsibility, of the European Federation of Radiographer Societies who represent over 115,000 radiographers across Europe. His research interests lie largely in the areas of education and neuroimaging in dementia and multiple sclerosis.

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