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  • 00:00

    [MUSIC PLAYING]

  • 00:14

    DR. JAMES FLETCHER: Hi, everybody.I'm Dr. James Rupert Fletcher.And I'm a teaching fellow at the Department of Global Healthand Social Medicine at King's College London.My major research interests is dementia.And I'm particularly interested in both family dementia careand the dementia research industry more generally.

  • 00:35

    DR. JAMES FLETCHER [continued]: Now, I'm a sociologist by background.And I mostly use social scientific methodsand sociological theory to try to better understandpeople's experiences of dementia.Today I'm going to talk about my doctoral research

  • 00:58

    DR. JAMES FLETCHER [continued]: project, which focus on unpackingthe relational dynamics within families affected by dementia.And this project stem from two real areas of inspiration.The first is the sociology of mental illness, whichhas been quite a rich field since the 1960sbut has typically been applied to more

  • 01:22

    DR. JAMES FLETCHER [continued]: conventional mental illnesses, such as schizophrenia,depression, and anxiety.And I noticed that there was a lack of work dealingwith dementia, specifically.The second inspiration for this projectcame from the traditional focus of dementia researchon people who are highly engaged with services.

  • 01:44

    DR. JAMES FLETCHER [continued]: Projects typically find their participantsvia dementia related services.And this is a problem because the majority of people livingwith dementia in the UK are relativelydisengaged from services.Many will only see a GP once or twice a year.And they'll receive little extra formal support.

  • 02:06

    DR. JAMES FLETCHER [continued]: And so I wanted to develop a project thatapplied to the sociology of mental illness to dementiaand focused on the experiences of those people who were moredisengaged from services than those who are traditionallyinvolved in dementia research.And to develop my research questions,I turned to the work of the famous 20th century sociologist

  • 02:30

    DR. JAMES FLETCHER [continued]: Erving Goffman.Now, Erving Goffman was a symbolic interactionist.And his work was influential in the sociologyof mental illness.And for him, the answer to social organizationin this organization could be foundin the relationships between people and the waythat they interacted with one another.

  • 02:52

    DR. JAMES FLETCHER [continued]: And so drawing on this scholarship,I chose to focus on the relational dynamics of familiesaffected by dementia living in the community.My decision to focus on people affected by dementia living

  • 03:12

    DR. JAMES FLETCHER [continued]: in the community who were relativelydisengaged from services presentedparticular methodological challengesbecause these people can be considereda hard-to-access population.And in the social sciences, what wemean by a hard-to-access populationis a population that is typicallydifficult to recruit into research because it

  • 03:33

    DR. JAMES FLETCHER [continued]: is difficult to reach them with either informationabout the project or through our recruitment activities.And if you think about people living with dementiain the community, they could be living near any of usright now.They may be one or two doors down from our own.But we may not know that they are living there.They may leave their house very infrequently.

  • 03:55

    DR. JAMES FLETCHER [continued]: And so engaging with them presentsa particular challenge.I decided to base my research on in-depth interviewswith people living with dementia and their family carers.Now, since the end of the 20th centuryand the beginning of the 21st century,

  • 04:15

    DR. JAMES FLETCHER [continued]: dementia research is being much more inclusiveof people living with dementia as participantsin these types of study.But historically, people living with dementiawere excluded from dementia researchbecause it was assumed that they could not meaningfullyparticipate because of their cognitive impairment.And as a result, researcher or carer views on dementia

  • 04:37

    DR. JAMES FLETCHER [continued]: has often been used as proxies for the views of peopleliving with dementia.However, over recent decades, we'vebecome increasingly appreciative of the abilities of peopleliving with mild and moderate dementiasto participate meaningfully in interview studies.And so for this reason, I chose to involve people with dementia

  • 05:00

    DR. JAMES FLETCHER [continued]: in the project as interviewees.My preferred approach to recruiting peopleliving with dementia in the community whowere relatively disengaged from serviceswas to use an approach that we call snowball sampling.

  • 05:22

    DR. JAMES FLETCHER [continued]: Now, snowball sampling involves approaching a small groupof initial contacts who may be known to us formallyor informally and presenting them with informationabout the project.We then ask those people to pass on that information to peopleknow to them, again, formally or informally,

  • 05:43

    DR. JAMES FLETCHER [continued]: who may be appropriate for participation in the projector who may know people who could be potential participants.And, again, they ask those peopleto pass on the information about the projectto their own personal contacts.And in this way, I might approach five people.And those five people might collectively

  • 06:04

    DR. JAMES FLETCHER [continued]: approach 25 people.And those 25 people, 125 people, and so on and so forthuntil from a small number of personal contacts, the snowballstarts rolling and gathers extra participantsuntil we manage to reach quite a large number of peoplewho we would struggle to reach in a more systematic manner.

  • 06:29

    DR. JAMES FLETCHER [continued]: Now, research, particularly with groups who are commonlydeemed vulnerable, such as people with dementia,has to go through quite a stringent ethical reviewprocess.And during this process, the research ethics committeewas unhappy with my proposal to snowball samplefrom personal contacts.

  • 06:49

    DR. JAMES FLETCHER [continued]: They believed that working through personal contactswould lead to potential coercion, whereby people wouldfeel impelled to participate in the projecteven if they didn't really want to becauseof their personal association with me.They would feel pressured by that relationship.Rather than use the snowball sample approach,

  • 07:12

    DR. JAMES FLETCHER [continued]: we settled on an approach based on using local organizationsto reach out to potential participants.But, importantly, these organizationswere not involved in dementia specifically sothat the danger of recruiting overly engaged participants

  • 07:32

    DR. JAMES FLETCHER [continued]: would be limited.As a result, I recruited via local organizations in the EastMidlands region, such as the universities of the third age,women's institutes, and local churches.Now, this still carries some risk of recruiting participantswho are service engaged because those people are also

  • 07:53

    DR. JAMES FLETCHER [continued]: more likely to be engaged in local organizations,such as churches or women's institutes.However, it does remove the dangerthat people are specifically engaged with dementia servicesoutright because those services were not involved.To put this approach into practice,I contacted around 800 local organizations.

  • 08:16

    DR. JAMES FLETCHER [continued]: And I passed on the project detailsand asked them to pass on those detailsto any potential participant.Now, this resulted in a sample of seven people with dementia.And so this approach is very inefficient.It's what we might call a brute force approach to recruitment,whereby a lot of initial effort and a lot of initial contacts

  • 08:40

    DR. JAMES FLETCHER [continued]: eventually result in a relatively small sample.Once I had recruited the seven people with dementiainto the project, we then went through an ecomapping process.Now, the ecomapping method is somethingthat I appropriated from nursing research.And it's a method that has traditionally

  • 09:01

    DR. JAMES FLETCHER [continued]: used by nursing research and in some clinical practicesettings.And ecomapping involved providing the seven peoplewith dementia with an A3 template, whichhave them depicted in the center and then a series of boxesaround the outside in which they were asked to include

  • 09:22

    DR. JAMES FLETCHER [continued]: the details of people who were important to themin their everyday lives.And this was an important method, firstly,because it allowed people with dementia to be more involvedin the methodology in terms of conceptualizing careand who they considered their carersto be rather than imposing the researcher's views of what

  • 09:45

    DR. JAMES FLETCHER [continued]: care was and of who counted as a carer.And it was also important because itwas cognitively stimulating.It meant that if a participant wereto forget how far along the process they had got,they could look down into their lap and see the ecomapand pick up where they left off.And this resulted in a sample of 34 people affected by dementia,

  • 10:10

    DR. JAMES FLETCHER [continued]: including both people with dementia themselvesand the carers they identified.And they then reached out to the carers identifiedby the people with dementia and recruited theminto the study as interview participants.

  • 10:31

    DR. JAMES FLETCHER [continued]: Perhaps the most important ethical considerationfor social scientific research on dementiathat is conducted in England and Wales, as this project was,is that it respects the stipulations of the MentalCapacity Act 2005.Now, the Mental Capacity Act covers any researchthat's conducted with people who have an injury of the brain

  • 10:55

    DR. JAMES FLETCHER [continued]: or mind that might impair its function in some way.And this includes a broad range of considerations,including all people with a diagnosis of dementia.The Mental Capacity Act essentiallyguards the decision making processfor people who are potentially vulnerabledue to mental and intellectual impairments

  • 11:19

    DR. JAMES FLETCHER [continued]: and makes sure that those people who are able toare allowed to make decisions in research,and that those people who may not be able to are protected,and that procedures are put in place so that decisionscan be made with their best interests in mind.The Mental Capacity Act of England and Walesand mental capacity legislation around the world

  • 11:42

    DR. JAMES FLETCHER [continued]: generally is a rather contentious subjectbecause it seemingly contravenes basic human rights,such as those enshrined in the UN Conventionon the Rights of Persons Living with Disabilities.Now, this convention enshrines certain rights,such as equal recognition before the law, whereas capacity

  • 12:03

    DR. JAMES FLETCHER [continued]: legislation is fundamentally concerned with delineatingtwo different types of people with two different typesof legal status--those who by virtue of a disabilitydo not have the legal ability to make a particular decisionand those who do have the legal abilityto make a particular decision.

  • 12:23

    DR. JAMES FLETCHER [continued]: Now, many countries, including the UK,have both signed up to the UN Convention on the Rightsof Persons with Disabilities.And they also have capacity legislationthat seeks to discriminate legal rights basedon particular mental and intellectual disabilities.And in these cases, researchers are typically

  • 12:45

    DR. JAMES FLETCHER [continued]: forced to follow the national legislation rather thanthe international conventions.And as a result, there is a strong argumentthat research, such as mine, whichfollows national mental capacity legislation,is actually contravening basic human rights.

  • 13:11

    DR. JAMES FLETCHER [continued]: One side had satisfied the various ethical and legalrequirements for conducting research with peoplewith cognitive impairments.And I had recruited the 34 people affected by dementiainto the project.I began to conduct in-depth, semi-structured qualitativeinterviews with those participants.

  • 13:31

    DR. JAMES FLETCHER [continued]: Now, these interviews were guidedby what we call topic guides.And topic guides are not lists of particular questionsthat we want to ask a participant.Rather, they are bullet pointed notes of particular themesand issues that we want to cover with those participants.Now, we do this because interviews

  • 13:52

    DR. JAMES FLETCHER [continued]: that are semi-structured and rely on a topic guideare more conversational, flexible, and more attunedto the particular interests of the participant, whichmeans that that person can lead the interview to some extent.Now, inevitably, there are limits to this.And it is the challenge of a interviewer

  • 14:14

    DR. JAMES FLETCHER [continued]: to ensure that, whilst the participant isable to lead the discussion into areas thatare important to them, the interview also remains on topicand does not get too far wide of the actual research focusitself.For this project, I chose to interview the carers first

  • 14:34

    DR. JAMES FLETCHER [continued]: following the ecomapping process.And I interviewed those carers in orderof prioritization as set by the person with dementia whilstecomapping.And that means that during ecomapping,I asked the person with dementia to rank the carers in orderof their importance.And I began with the person deemed least important.

  • 14:57

    DR. JAMES FLETCHER [continued]: And this meant that by the time I got to those interviewswith the main carer and latterly with the person with dementiathemselves, I've been able to amassa certain deal of background knowledgeabout each family group.And so I was better able to ask more pertinent and poignantquestions.

  • 15:17

    DR. JAMES FLETCHER [continued]: As discussed, historically, peoplewith diagnoses of dementia have historicallybeen excluded from these types of interviews becauseof misconceptions that that particular cognitiveimpairments meant that they were unable to meaningfullycontribute any valuable insights to research.But over the past three decades, dementia studies

  • 15:39

    DR. JAMES FLETCHER [continued]: has come a long way in terms of meaningfully including peoplewith dementia in research, firstly as participantsand latterly even as carer researchersand as lead researchers on projects themselves.There are various strategies for including peoplewith dementia in research and for ensuringthat they're able to meaningfully contribute

  • 16:02

    DR. JAMES FLETCHER [continued]: as much as possible.Now, these include not filling in blank spaces.So if the participant needs to pause to collect their thoughtsor to articulate a particular answer,it's very important that an interviewer does notinterject in that pause or seek to answeron behalf of the participant even if that pause is quite

  • 16:25

    DR. JAMES FLETCHER [continued]: long, for, say, 30 seconds, as thiscan be a real challenge for people with dementiato then pick up the train of thought again.When it comes to analyzing interview data,the first stage is transcribing those interviews.

  • 16:48

    DR. JAMES FLETCHER [continued]: Now, I'm a big fan of personally transcribing interviews.Even though it's quite a lengthy process,it means that the research is highlyfamiliarized with the content of those interviews.Now, personally, for me, it usuallytakes me about eight hours to transcribea one-hour interview, which is a major time commitment.

  • 17:11

    DR. JAMES FLETCHER [continued]: But it really pays dividends in the analysisbecause I am highly familiarized with the interview data itself.I then take these transcripts and enter theminto a piece of software called NVivo.Now, NVivo is an analysis software, specifically

  • 17:32

    DR. JAMES FLETCHER [continued]: for qualitative research.But it does not do the analysis for us.The analysis is still highly dependent on the researcher,him or herself.The benefits of using a piece of software like NVivoare that they make the process more manageable.And by making the process more manageable,

  • 17:53

    DR. JAMES FLETCHER [continued]: that increases our rigor and the sophisticationthat we're able to achieve when we come to analyze the data.For this project, I chose to conduct thematic analysis.Thematic analysis is principally concerned with pullingkey broad themes out of participants'accounts of their experiences.

  • 18:14

    DR. JAMES FLETCHER [continued]: And the thematic analysis processbegins with my new coding of the data.And we apply what we call codes to the interview transcripts.Now, codes are single words or brief phrasesthat paraphrased the meaning of large sections of text.And so we move through the transcripts systematically.

  • 18:37

    DR. JAMES FLETCHER [continued]: And we apply these codes, these small words,that capture the meaning of sections of textthroughout the text.And this is essentially a processof whittling the data down to make it more manageableso that instead of having whole sentences,we're able to capture that meaning in single words, whichmakes the data more amenable to our analysis.

  • 19:00

    DR. JAMES FLETCHER [continued]: When we've worked through the interview transcriptsand through the list of minute codesto arrive at a full list of categorical codes, whichencompass the meaning of the minute codes, which in turnencompass the meaning of the interview transcripts,we can then apply a similar coding processto the categorical codes to arrive at our themes.

  • 19:21

    DR. JAMES FLETCHER [continued]: Now, our themes will encompass the meaningof several categorical codes together.And when we produce these themes,it's important to consider the relationshipsbetween categories, so whether a particular category causesanother category or perhaps whether two categories combineto produce a third category.

  • 19:41

    DR. JAMES FLETCHER [continued]: And this is then what we communicate as our researchfindings.Now, if this process seems a little vague and a littledependent on researcher interpretation,that's because it is.And this fundamentally speaks to some of the tensionswithin quantitative and qualitative research.So where is qualitative research takes incredibly rich,

  • 20:05

    DR. JAMES FLETCHER [continued]: well-developed data sets and appliesa fairly unsophisticated analysisto make sense of that data, quantitative researchtypically has very limited data setsthat have a series of heavily specified and limited questionsand answers to those questions from a large number of people.

  • 20:25

    DR. JAMES FLETCHER [continued]: But because those questions are systematized,they're able to apply much more sophisticatedanalytic techniques to those data sets.And so here there's always fundamentally a tensionbetween the richness and depth of the dataand the sophistication of the analytic strategythat we're able to apply to that data set.

  • 20:57

    DR. JAMES FLETCHER [continued]: The thematic analysis of the entity datafrom my participants affected by dementiaresulted in four key themes.The first of these I termed Alzheimerised senility.And this theme turned to the waysin which participants understood their particular diagnoses

  • 21:17

    DR. JAMES FLETCHER [continued]: and what that meant for them.Now, Alzheimerised senility refersto the ways in which participants associatedtheir dementia with older age.And for some people, dementia was seenas a natural part of older age.However, it also denotes the mannerin which these people were partly aware

  • 21:40

    DR. JAMES FLETCHER [continued]: of the medicalization of dementia.They were partly aware that it involved processesoccurring in the brain.And to this end, they did typically refer to the brainand to potential future advances in research thatcould cure certain dementias.And so these participants occupied a middle zone

  • 22:04

    DR. JAMES FLETCHER [continued]: wherein dementia was partly a natural feature of later lifeand was partly a particular disease processaffecting the brain.The second major theme was the matter of deviance visibility.Now, in the sociology of mental illness,when we refer to deviance, we typically

  • 22:25

    DR. JAMES FLETCHER [continued]: refer to a type of attribute or characteristicthat deviates from an accepted norm.And in this sense, it was found that participants'cognitive disabilities deviated from societal normsof cognitive ableness.And what that meant in practice was that these participants

  • 22:46

    DR. JAMES FLETCHER [continued]: sought to find ways to conceal their differentnessin social situations.And they would develop various strategiesso that they could act as if they did not have dementia whenthey were in the company of peoplewho did not know that they have been diagnosed with dementia.The third major theme was the dyadic career.

  • 23:07

    DR. JAMES FLETCHER [continued]: Now, the dyadic career denotes the tendencyfor the person with dementia and their main carerto be limited to very particular relationshipsand to not be able to escape those relational dynamics thatchange over time and that typically hardenedand degraded the quality of that relationship.

  • 23:29

    DR. JAMES FLETCHER [continued]: And this was partially enforced by the lack of engagementwith people outside of that couple relationship,which we refer to as the dyad.The fourth and final theme was the unequal distributionof care roles.And what I found in these family networkswas that the majority of the care responsibilities

  • 23:52

    DR. JAMES FLETCHER [continued]: would be designated to a single main carer.And the rest of the people within that networkwould be fairly peripheral when it came to involvementin care itself.And this was partially responsiblefor the dyadic career and for the ways in which the couple'srelationship at the center of dementia

  • 24:13

    DR. JAMES FLETCHER [continued]: would harden over time.And so these were the four main findings from the study itself.Though unanticipated at the time,the compromise with the ethics committeethat led to me recruiting through various local

  • 24:37

    DR. JAMES FLETCHER [continued]: organizations, such as churches and women's institutes,meant that the eventual sample was made up largelyof white middle class men living with dementia.And this happened because the contacts at those institutionswere largely White middle class women who were the wives of men

  • 24:58

    DR. JAMES FLETCHER [continued]: living with dementia.Now, this did not have too much importancefor the project itself because it was notconcerned with the demographic characteristicsof the participants so much as their lack of involvementwith dementia services specifically.But it does serve as an important reminderfor researchers that early methodological decisions can

  • 25:21

    DR. JAMES FLETCHER [continued]: have unforeseen consequences for the study itself,and particularly, for the kind of samplethat that project might generate.Another important area for reflectionis the recruitment strategy itself.Now, I stated that recruitment strategy involvesme going to around 800 local organizations

  • 25:41

    DR. JAMES FLETCHER [continued]: to recruit seven people with dementia, which is a highlylabor intensive strategy.And in hindsight, a better approachmight have been to include local adverts detailingthe project in local newspaper outlets and on local radio.And this might have had the same effect of reaching

  • 26:02

    DR. JAMES FLETCHER [continued]: people living in the community.But it might have had a much greater spreadthan having to contact around 800 local organizations.And similar research in the futuremay want to adopt this approach rather than the brute forceapproach of contacting a lot of initial contacts.Finally, it's important to reflect on the benefits

  • 26:24

    DR. JAMES FLETCHER [continued]: that the ecomapping approach had in this project.Firstly, the ecomapping process wasvery important in including peoplewith dementia in research in a meaningful way in termsof conceptualizing care and the carers in the study.And this meant that people with dementiawere able to guide some key assumptions within the project.

  • 26:48

    DR. JAMES FLETCHER [continued]: They were able to tell me who their carers were ratherthan me telling them who their carers are,as is done in traditional dementia research.And, secondly, the process was cognitively enabling.And this meant that because it wasa tactile and a visual methodology

  • 27:08

    DR. JAMES FLETCHER [continued]: that the participant could see in front of them,if they were to transiently forget what they were doingor where they were in that process,they had a visual stimulus in front of themthat they were able to use to reinsert themselvesinto the process and to pick up where they left off.And in this way, visual tactile methodologies

  • 27:31

    DR. JAMES FLETCHER [continued]: can be a really important means of including people in researchwho traditionally have been overlookedas participants because of particular cognitiveimpairments.So looking forward, I would encourage researcherswho work with populations with cognitive impairmentsto consider these types of methodsto improve the inclusivity of their research designs.

Abstract

Dr. James Fletcher, Teaching Fellow at King's College London, discusses researching experiences of dementia with participant-led interviews, including the study plan and design, ethical considerations, data collection and analysis, and unexpected methodological challenges.

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Researching Experiences of Dementia With Participant-Led Interviews

Dr. James Fletcher, Teaching Fellow at King's College London, discusses researching experiences of dementia with participant-led interviews, including the study plan and design, ethical considerations, data collection and analysis, and unexpected methodological challenges.

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