PART 1: Aims of the project
by Richard Kilborn
This is the first of a series of blogs presenting the findings of a project recently undertaken by “Our Connected Neighbourhoods” and “Ideas for Ears”. The main aim of the project was to establish the degree of cross-over between the experiences of those living with dementia and those with hearing loss. In statistical terms there is a significant link between hearing loss and dementia. According to one study, people with hearing loss are twice as likely to develop dementia and this increases to three times with moderate hearing loss. This blog describes what led to the project being set up and how we went about putting together a questionnaire to gather the views on these issues from amongst the local community.
Planning the project
For those members of the community living with some form of disability, keeping up contacts with others during the period of the Covid pandemic and getting through to the various support services has proved to be a major challenge. At the same time, constraints on one’s freedom of movement and restrictions on access to favoured meeting places has led to a growing sense of isolation on the part of many in the disabled community. During the period of lockdown, charitable organisations and support agencies have tried as best as they can to maintain the same level of support as they were able to provide in pre-Covid times. In the event, this has proved to be far from easy – and regrettably many of those who work for such organisations have had to witness a marked deterioration in the mental and condition of those they have been supporting.
Given the challenges that organisations have had to face, special efforts have been made to devise additional strategies for keeping in touch with their various user groups and, in turn, helping members of these groups to avoid becoming isolated. There have, for instance, been a number of initiatives to help people familiarize themselves with the digital technologies, thus enabling them to participate in communal video conversations. Another strategy that has been adopted by some groups has been to devise ways of collaborating with members of kindred organisations in order to compare notes on how the needs of people in the respective groups are being met. What can different organisations learn from each other? Can a collaborative approach help to identify forms of support that have been hitherto neglected?
The present project is an example of one such collaborative initiative. It started life when OCN got together with “Ideas for Ears” (IFE) to discover whether there was a potential overlap in the ways that each organisation was seeking to meet the needs of its respective group members. IFE describes itself as a “fresh thinking social enterprise that is run by people with hearing loss”. Its aim is to “enable greater equality, diversity and inclusivity and to promote higher levels of participation, wellbeing and independence”.
Following on from one or two informal exchanges between members of OCN and IFE, it was agreed that we should embark on a collaborative venture in which we would attempt to establish the common ground that might exist between the ways in which the conditions of hearing loss and memory loss were talked about. We were clear from the outset that it was possible to view talking about these conditions from several different perspectives. First and foremost, there was the viewpoint of the individual who had first-hand experience: the person living with hearing or memory loss. Just as important for our study, however, was to gather the views of those who were – arguably – equally exposed to the impact of these conditions: the partners and family members of a loved one who was having to come to terms with what in many cases was a life-changing condition In addition – and since hearing loss and memory loss are principally, though by no means exclusively experienced by people in their later years – we were interested in getting to know the thoughts and opinions of members of older generation groups on how the respective conditions were talked about. Among other things we also wanted to hear from those who had so far not been directly affected by either of these conditions. Was sufficient effort being made to encourage a more honest debate about the impact on individuals on receiving a diagnosis of hearing or memory loss? And specifically, what steps might be undertaken to destigmatise the ways in which the conditions were talked about?
Planning the survey
When we set about making a plan of action for our project, we quickly recognised it would have to be of modest proportions. The start of the project coincided with the onset of the Covid pandemic and this was clearly going to make it more difficult to set up meetings with prospective informants and to conduct face to face interviews.
We were also aware that the subject of our inquiry would involve getting people to talk about quite sensitive issues. When one first discovers that one has a medical condition that can have a serious impact on one’s life, there is often a reluctance or reticence to accept that this is the case. Admitting the fact to oneself may be difficult enough in itself. Finding the right words and the right occasion to talk honestly and openly about the issues to a partner or friend can also prove to be challenging. What kind of setting is best suited to the broaching of one’s concerns? And how do you go about finding relevant information from agencies and organisations that have hitherto not been on one’s radar?
As a direct consequence of the pandemic, we quickly realised that our study would have to be more restricted in its scope than we would have preferred. Ideally, we would have liked to conduct a series of face-to-face interviews, but Covid restrictions meant this was not feasible. We therefore set about devising a questionnaire which we planned to distribute to groups of people in the Stirling area who we judged would be prepared to give us their views on how, in their experience, hearing and memory loss are spoken about.
The other issue we had to address when devising the questionnaire had to do with the words people use to describe their condition. People have very understandable concerns about any loss of ability in relation to hearing what others are saying or to remembering important events in their lives. When devising the questionnaire, therefore, we tried to be very sensitive to how respondents might react to the use of certain terms. We were very conscious of the fact that, over the years, the careless use of language when speaking about particular conditions had been both stigmatising and discriminating for those living with these conditions, as well as for the family and friends of those affected. As one person living with a disability once put it: “My biggest problem is your attitude”.
Though we always tried to employ non-discriminatory language, we sometimes had difficulties in framing the questions so as to avoid the charge that they were implicitly stereotyping those living with hearing or memory loss. We were also aware that the very attempt to use inclusive and non-discriminatory language might lead to us falling into the trap of using words and phrases that might appear to be all too euphemistic to some of our respondents.
The word or term that possibly presented us with the greatest challenge was ‘dementia’. Such are the connotations and associations of this word that we were initially cautious about including it in any of the questions in our survey. Our problem, however, was that ‘memory loss’ is actually by no means the only symptom of dementia. So, by focussing respondents’ attention on the memory-loss aspect, we might be seen to be introducing a distorting element into the survey. Our fear was that, by opting to proceed in this way, we might ourselves be accused of not knowing what to ask and how to ask it. In the end, we decided on a compromise solution to this problem and chose to use more generalised descriptors such as ‘people with memory loss’.
By framing our questions relating to memory loss in this way we were also relying on respondents’ ability to make their own connections with dementia. It was, therefore, gratifying to see that respondents seemed to have a good understanding of what we wanted to hear about when we asked them about their views on memory loss. Indeed, when given the opportunity to air their views in the ‘Any Additional Comments’ parts of the survey, several respondents drew attention to the fact that an important distinction needed to be drawn between memory loss which could have a variety of causes, and dementia, which could manifest a range of symptoms as well as presenting differently in different people.
When devising the questions in our survey relating to hearing loss, we did not face the same dilemmas as we did with memory loss. This may also have something to do with the fact that there appear to be different levels of concern regarding hearing loss. There may, moreover, be slightly greater stigma still attached to dementia than to hearing loss. As one of our survey respondents subsequently commented:
“If deafness is stigmatised, how much more so is memory loss! My memory is fine at the moment, but I think it could be difficult owning up to memory loss at work for fear that it could put my job at risk. Because of the link between memory loss and dementia, I believe memory loss would be a heavier burden than deafness.”.
Already at this early stage in the project we were beginning to realise that it might be more difficult than we might have imagined getting people to open about some of these issues. In particular, there seems to be a greater reluctance to talk about dementia than hearing loss. In the following blogs we will begin to explore people’s responses to the survey in greater detail. And at the end of each blog we will append a few tentative ideas, under the heading “Action Point”, as to how some of respondents’ suggestions might be put into practice.
Continues in BLOG SERIES: KNOWING WHAT TO SAY AND HOW TO SAY IT – PT.2, already live on the blog.
PT.3 and 4 will be published on Friday 3rd September.