Deafness and Dementia Talk Video
FILM CLIP ONE
SLIDE 1 – INTRODUCTION
Hello, and a very warm welcome to this presentation on the deafscotland report ‘Deafness and Dementia: Predicting the Future for Scotland’. This publication is the outcome of research carried out in partnership with Queen Margaret University and was funded by the Life Changes Trust.
The presentation will be in two parts. In the first part I will explain how the project idea came about and the background to it. I will then summarise the format of the project and how the methodology was applied.
The second part of the presentation will look at the findings and their implications for the future.
SETTING THE SCENE
Firstly, to set the scene in terms of context, there is a known association between hearing loss and dementia and it is thought that untreated hearing loss may be a risk factor for cognitive decline.
In 2017, the Lancet Commission concluded that 35% of dementia could be prevented by modifying 9 risk factors: mid-life hearing loss was one of those factors and as such hearing loss is now considered to be a potentially modifiable risk factor for dementia.
While the link between hearing loss and dementia has been firmly established, and an increasing amount of research on the topic has been done, there was a noticeable gap in studies that were specific to the situation in Scotland. This research project aimed to address this gap by undertaking a scoping exercise to establish prevalence rates and an evaluation of current service provision for those with hearing loss and dementia in Scotland.
SLIDE 2 – WHAT WE WILL DISCUSS IN PART ONE
As mentioned, this presentation will be in two parts. In this first part we will be dealing with:
– Background to the Research
– The Lancet Commission
– Numbers of deaf people in Scotland
– Format of the Research
– Data Sources
SLIDE 3 – THE LANCET COMMISSION
In 2017, the Lancet Commission on Dementia Prevention, Intervention and Care concluded that 35% of dementia could potentially be prevented by modifying 9 risk factors:
-midlife hearing loss
-late life depression
The three most common potentially modifiable risk factors the Commission identified were
-poor early school education,
-midlife hearing loss
The Lancet Commission stated:
Acting now on dementia prevention, intervention, and care will vastly improve living and dying for individuals with dementia and their families, and in doing so, will transform the future for society.
Since the findings of this 2017 report, hearing loss has been considered to be a potentially modifiable risk factor for dementia.
On 30 July 2020, the Lancet Commission published a report that updated the 2017 findings and included a further 3 additional potentially modifiable risk factors for dementia. These factors are:
-excessive alcohol consumption
In the ‘Dementia prevention, intervention, and care 2020 report’, it is suggested that the now 12 potentially modifiable risk factors should be further researched. In terms of mid-life hearing loss, the Commission suggest:
1. encouraging the use of hearing aids for hearing loss
2. reducing hearing loss by the protection of ears from excessive noise exposure.
These findings will no doubt continue to stimulate debate and encourage further research.
SLIDE 4 – INSPIRATION FOR OUR PROJECT
deafscotland wanted to add to the hearing loss and dementia evidence base and had been discussing ideas for a research topic with Queen Margaret University.
The initial idea for the eventual project was found in a 2015 study carried out in Germany.
In this particular study, Teipel and his team had looked at the Insurance Claims data of the largest public health insurance company in Germany.
Using the data obtained from this sample, it was possible to carry out analysis on the association between regional prevalence of dementia and hearing impairment.
The results confirmed that the relationship between hearing loss and dementia also existed at a regional level. These findings served to emphasise the role of hearing impairment as a risk factor for dementia and were thought to be relevant for planning the service provision necessary at regional and national level.
How far could this type of study be applied to the situation in Scotland? Was it possible to obtain regional prevalence rates for hearing loss and dementia here? We decided to try to find out!
SLIDE 5 – THE FOUR PILLARS OF DEAFNESS MODEL
To ensure that the whole spectrum of deafness is included and to emphasise the diversity required in terms of the range of services needed for those with hearing loss and dementia in Scotland, this project adhered to the ‘Four Pillars of Deafness’ model. The four pillars are:
-British Sign Language Users
-People who are Deaf blind
-People who are Deafened
-People who are hard of hearing
SLIDE 6 – HOW MANY PEOPLE HAVE HEARING LOSS IN SCOTLAND?
It is widely known that the exact numbers of deaf people in Scotland varies depending upon which source is consulted.
This lack of clarity is problematic when it comes to planning the delivery of future services and it is widely recognised that there is a need to establish better reporting procedures in order to capture relevant statistics.
SLIDE 7 – RESEARCH METHODOLOGY
This research study is a partnership between deafscotland and Queen Margaret University and has been funded by the Life Changes Trust. The research proposal was approved by the QMU Ethics Committee prior to the start of the project.
This research was a Mixed Methods study using qualitative and quantitative data. A full literature review was carried out and then the project was split into two parts.
In the first part, the intention was to undertake a search for sources which provide statistics on deafness and dementia. From these figures, base-line numbers for each of the 32 Local Authorities in Scotland would be calculated. Then, using population statistics from the National Records Office, these numbers would projected to give future estimates.
Part Two of the project involved a Focus Group of Audiologists in Scotland. Participants in this group would be asked to give opinion on the current service provision available for those with hearing loss and dementia.
SLIDE 8 – GATHERING DEMENTIA PREVALENCE FIGURES
Discussion with members of the Audiology profession confirmed that at present there is no uniform standardised method to record whether a patient has dementia. In relation to recording data in Audiology Services, it was pointed out that, while it would, of course, be possible to include some sort of ‘note’ on the patient record, there is no dedicated marker field to enable this and as a consequence it would not be a searchable criteria in terms of data collection.
It was suggested that markers relating to deafness and dementia might be noted on individual patient records at GP level and this may be a way of collecting prevalence figures. However, it was pointed out that, as there is no uniform process for this, it would be at the discretion of practices to carry out such a method and so, if any data was available from this route, it was not likely to provide a national picture.
Subsequently, it was suggested that it might be possible to gain an overview of GP data by making a research request to the Scottish Primary Care Information Resource (SPIRE). This suggestion was taken and a request was made.
SLIDE 9 – SCOTTISH PRIMARY CARE INFORMATION SERVICE
Launched in May 2017, the aim of SPIRE is to provide a single national system to extract data from General Practice clinical IT systems in Scotland.
An information request to SPIRE was submitted, asking what type of data they currently held on hearing loss and dementia prevalence rates in Scotland.
SPIRE were able to provide dementia prevalence figures for Scotland for the 3 year period April 2016-April 2019. These figures were broken down into Local Authority areas but it was not possible to break them down into either gender or age categories.
However, the SPIRE database does not hold any information on hearing loss as it is not collected at GP level.
SLIDE 10 – ALZHEIMER SCOTLAND
In addition to the dementia rates provided by SPIRE, Alzheimer Scotland statistics were obtained. Alzheimer Scotland state that:
‘there are an estimated 90,000 people with dementia in Scotland. Around 3,000 of these people will be under the age of 65 years. This estimate is based on the results of studies that screen for cognitive problems and dementia within the population of a set geographical area. There have been no such studies in Scotland, so we rely on the best available evidence from Europe’
Upon request, prevalence rates for 2019 were provided, these figures were broken down into age, gender and Local Authority area.
SLIDE 11– HEARING LOSS PREVALENCE FIGURES
The problematic nature of gaining numbers for the prevalence of hearing loss is widely known.
As stated, it was not possible to obtain prevalence rates of hearing loss from SPIRE.
In order to give as accurate a picture of numbers as possible of the number of people with hearing loss in Scotland, the Davis model was used. Although published in 1995, Adrian Davis’ comprehensive study on the prevalence of deafness in the UK population is still the bench mark for statistics in this field. Davis established percentages of prevalence for pre-defined age groups.
This work was refined in 2014, when Akeroyd used the 2011 Census data, applied the prevalence rate criteria that Davis had set out in 1995, and calculated estimated hearing loss for the UK population.
SLIDE 12 – ESTIMATING PREVALENCE FOR DEAFNESS AND DEMENTIA
The prevalence rates of deafness and dementia were calculated using both the data obtained from SPIRE and Alzheimer Scotland. In both cases, the estimates from the Davis model were used in the absence of actual hearing loss prevalence data.
SLIDE 13 – PROJECTING PREVALENCE FIGURES
Projections were created by applying 2016-based populations predictions from the National Records Office to the prevalence rates for dementia and hearing loss which were obtained using the Davis model. Once the prevalence rates for hearing loss and dementia were estimated, they were projected over a 20 year period in order to establish the overall trend for all 32 Councils in Scotland.
SLIDE 14 – QUALITATIVE : GROUP DISCUSSION
As stated, this part of the research took the form of a Discussion Group. Participants for the group were recruited from the Audiology profession and discussion was centred around the findings of stage one and perceived gaps in current provision and suggestions for information gathering strategies for the future.
SLIDE 15 – End of Part One
Well, that is the end of Part One! Join us in Part Two to find out what all this data tells us!!
FILM CLIP TWO
Overview of Part 2. In this part I will deal with:
-Data from SPIRE
-Data from Alzheimer Scotland
-Comparison of the Data Sources
-Findings – what next?
SLIDE 3 – ANALYSIS OF DATA FROM SPIRE
There were issues to consider in terms of the SPIRE data:
The data is obtained from individual GP practices in Scotland, however, the Quality and Outcomes Framework indicates that some practices have not returned data. This means that populations and registers for Clusters, Health and Social Care Partnerships, Local authorities and Health Boards are likely to be smaller than the reality.
Also, as a means of ensuring patient confidentiality, GP Practices do not detail values where there are less than 5 in a particular field. Again, this will result in lesser numbers. It is known that there is significant underreporting of dementia cases.
Another issue to consider is that Local Authorities with fewer GP practices could be subject to a higher variability due to the smaller sample size.
SLIDE 4 – ANALYSIS OF DATA FROM ALZHEIMER SCOTLAND
Alzheimer Scotland’s dementia numbers have been produced by taking population numbers from the National Records Office of Scotland (National Records of Scotland 2020) and multiplying these with European Collaboration on Dementia (EuroCoDe) prevalence rates for each age group.
SLIDE 5 – COMPARISON OF SPIRE AND ALZHEIMER SCOTLAND DATA
Prevalence rates calculated using data obtained from SPIRE differ substantially from the rates calculated using Alzheimer Scotland figures. This can be seen clearly in this table.
SLIDE 6 – ESTIMATING PREVALENCE RATES
The data obtained from Alzheimer Scotland was seen as the most robust and was used to define the prevalence rate estimates.
SLIDE 7 – ESTIMATING FUTURE NUMBERS
Once current prevalence rates were obtained it was possible to predict future prevalence. These projections were accomplished by applying 2016-based populations predictions from the National Records Office to the prevalence rates for dementia and hearing loss which were calculated using the Davis model. The figures were then projected over a 20 year period in order to establish the overall trend for all 32 Councils in Scotland.
SLIDE 8 – DISCUSSION GROUP
On the day of the meeting, participants were given a brief overview of the content and purpose of the research. They were informed that, while the overall aim was to establish prevalence rates for hearing loss and dementia and project these figures into the future, there was an additional project aim, that being to attempt to establish the perception of the current service provision for those with hearing loss and dementia. Rather than structured questions, a broad theme was put to the participants to encourage discussion. The participants were asked about their opinion on the level of service for those with dementia and hearing loss in Scotland at this time. They were also encouraged to suggest areas for improvement. This was to allow as wide a discussion as possible. Participants were assured confidentiality was guaranteed and all responses would be anonymised.
SLIDE 9 – SUMMARY OF GROUP DISCUSSION
A summary of the main participant responses were sorted into themes which are listed below.
Referral of Patients to Audiology
Stigma related to the term ‘dementia‘
Importance of Patient Autonomy/Agency
Multi-agency Service Provision/Linking in with Cognitive Impairment
Need for Education/Training
SLIDE 10 – FINDINGS/RECOMMENDATIONS
This project has been a scoping exercise to establish base line numbers and future projections to enable planning both at Local Authority and national levels. To supplement this data, it has also been possible to gather some initial views on current provision from members of the Audiology profession. Further qualitative research in this respect would be beneficial.
In 2014, Wright et al carried out a UK-wide exploratory survey of the Audiology profession. In this the researchers define their work as:‘one of the first papers to explore audiologists, views and experiences of working with people with dementia’ (Wright et al. 2014). They argued their study brought to the fore ‘interesting points worthy of further research using both quantitative and qualitative methods’. This has also been found to be true with our study.
Further qualitative research involving people with dementia and their carers is essential to inform service planning. “It is essential to understand the experience of living with dementia from the perspective of the person with dementia so that services can be appropriately constructed” (Murphy et al. 2014).
In addition, both current and future research proposals highlight the importance of understanding the link between hearing loss, social isolation and how this influences cognitive decline and dementia in older adults. Social isolation was identified as a later life modifying factor for dementia and as such, establishing the connection with hearing loss has the potential to positively impact two of the 9 factors.
It is important to consider deafness within the spectrum of the 4 pillars discussed within this report. Although hearing loss has overarching barriers to inclusion, each pillar has specific barriers that need to highlighted and addressed.
Overall, in terms of deafness and dementia prevalence in Scotland, there is no central data collection point. The data held by GPs is not as yet accessible by Audiology Services. Gaps in data recording ultimately result in under-reporting and inevitable gaps in service provision for individuals with hearing loss and dementia. Moving forward it is essential to address these gaps.
SLIDE 11 – FUTURE RESEARCH IN THE WIDER ARENA
Collaborative international studies on-going at present are scheduled to publish results in 2022. For example, researchers at Johns Hopkins University have launched a major randomised controlled trial which seeks to establish if treatment for hearing loss can actually prevent or slow down cognitive decline. This study will also investigate the impact of any treatment of hearing loss has upon loneliness and social isolation.
Furthermore, Dr Piers Dawes will build on previous research at the University of Manchester in a project jointly funded by Alzheimers Research UK and Action on Hearing Loss. As with the previous new project, results are due in 2022 and, within the study, researchers will investigate
“if dementia is directly caused by hearing loss, if dementia is an indirect consequence of social isolation caused by hearing problems, or if there are other biological factors that increase the risk of both hearing loss and dementia”
There is a shift in emphasis in terms of research questions as knowledge on hearing loss and dementia is documented; recent studies seek to shed light on the importance of preventing social isolation due to hearing loss and the impact this can have on dementia. In this regard, hearing loss is not only a potentially modifiable factor for dementia in its’ own right, but it potentially has a strong link to one of the other factors listed by The Lancet Commission, namely, social isolation. If the link between the two is further demonstrated, the importance of managing hearing loss in terms of managing dementia becomes apparent.
SLIDE 12 – COVID
The current UK-wide COVID-19 Lockdown has brought the impact and understanding of social isolation into the mainstream and the devastating affects this isolation has on people with dementia has been openly discussed in the media. Those with hearing loss are at risk of increased social isolation; those with hearing loss and dementia are doubly vulnerable and the limited social interaction during Lockdown increases the risk even further.
SLIDE 13 – SUMMING UP
There can be no doubt that COVID-19 pandemic has brought with it a unique chance for a greater understanding of social isolation that many with communication difficulties experience on a daily basis. It is essential to build on these new levels of awareness in society and use the momentum to bridge the gaps that exist in current service provision for those with hearing loss and dementia.
I hope you have enjoyed the content of the presentation. Please take a note of my contact details and don’t hesitate to get in touch if you would like to clarify anything from today. Thank you for your interest, it has been great to tell you about the research journey so far!
SLIDE 14 – REFERENCES
This last slide provides links to the sources referred to in the presentation.