Introduction
Although the subjective experience of dementia is unique to the individual, the condition is characterised by progressive deterioration in cognitive and functional ability (World Health Organization 2022) as well as psychological, behavioural and physical symptoms (Alzheimer’s Society 2022; Cohen-Mansfield Reference Cohen-Mansfield, Lichtenberg, Mast, Carpenter and Loebach Wetherell2015). There is also considerable variability in rates of progression (Melis et al. Reference Melis, Haaksma and Muniz-Terrera2019), so that individual disease trajectories are initially uncertain. Although dementia is a neurobiological condition, it should also be viewed within a psycho-social framework in which there are psychological responses to the condition within a social context (Bunn et al. Reference Bunn, Goodman, Sworn, Rait, Brayne, Robinson, McNeilly and Iliffe2012; Pratt and Wilkinson Reference Pratt and Wilkinson2003), including the shift to frame dementia as a disability (e.g. Cahill Reference Cahill2022; Shakespeare et al. Reference Shakespeare, Zeilig and Mittler2019).
‘Living well’ with dementia is conceptualised as encompassing three interrelated constructs: quality of life, subjective wellbeing and life satisfaction (Clare et al. Reference Clare, Nelis, Quinn, Martyr, Henderson, Hindle, Jones, Jones, Knapp, Kopelman, Morris, Pickett, Rusted, Savitch, Thom and Victor2014). Adopted within several national dementia strategies and often associated with quality of life (Quinn et al. Reference Quinn, Pickett, Litherland, Morris, Martyr and Clare2022), policy and practitioner perspectives have emphasised the multi-dimensional aspect of living well, with a focus on the significance of close personal relationships as well as social inclusion (Austin et al. Reference Austin, O’Neill and Skevington2016). A systematic review showed that factors linked to relationships, social engagement and functional ability are associated with better quality of life (Martyr et al. Reference Martyr, Nelis, Quinn, Wu, Lamont, Henderson, Clarke, Vindel, Thom, Jones, Morris, Rusted, Victor and Clare2018). In cross-sectional analyses in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study, psychological wellbeing was the most important predictor of capability to ‘live well’, with physical health, social circumstances and functional ability all contributing factors (Clare et al. Reference Clare, Wu, Jones, Victor, Nelis, Martyr, Quinn, Litherland, Pickett, Hindle, Jones, Knapp, Kopelman, Morris, Rusted, Thom, Lamont, Henderson, Rippon, Hillman and Matthews2019). Self-efficacy, optimism and self-esteem have also been identified as key psychological variables to live well with dementia (Lamont et al. Reference Lamont, Nelis, Quinn, Martyr, Rippon, Kopelman, Hindle, Jones, Litherland and Clare2020). Longitudinally, previous studies have reported that, at group level, quality of life remains stable over time, although with individual variability (Livingston et al. Reference Livingston, Cooper, Woods, Milne and Katona2008; Trigg et al. Reference Trigg, Jones, Knapp, King and Lacey2015). The IDEAL cohort data identified, alongside groups with stable trajectories of good and poor quality of life, smaller groups with improving and declining trajectories (Clare, Gamble, Martyr, Sabatini et al. Reference Clare, Gamble, Martyr, Sabatini, Nelis, Quinn, Pentecost, Victor, Jones, Jones, Knapp, Litherland, Morris, Rusted, Thom, Collins, Henderson and Matthews2022).
Although largely using cross-sectional methods, qualitative research has added to understandings of living well and quality of life for people with dementia. In their meta-synthesis of qualitative studies, O’Rourke et al. (Reference O’Rourke, Duggleby, Fraser and Jerke2015) identified several critical concepts for quality of life in dementia, including connectedness to family and relationships such as social interaction with others, wellness and a sense of agency or purpose. Purposeful or meaningful activity affords people with dementia various benefits for quality of life (Han et al. Reference Han, Radel, McDowd and Sabata2016; Tierney and Beattie Reference Tierney and Beattie2020), with its importance also apparent for other groups: for example, those with neurodegenerative conditions such as multiple sclerosis and Parkinson’s disease (Desborough et al. Reference Desborough, Brunoro, Parkinson, Chisholm, Elisha, Drew, Fanning, Lueck, Bruestle, Cook, Suominen, Tricoli, Henschke and Phillips2020; Rafferty et al. Reference Rafferty, Nettnin, Goldman and MacDonald2021) and older people in general (Smith et al. Reference Smith, Tower, Palmer, Beecham and Welch2018). Other qualitative research has shown how people with dementia and their family members can have positive experiences and adapt to changing roles and relationships to live well with dementia (Colquhoun et al. Reference Colquhoun, Moses and Offord2019; Wolverson et al. Reference Wolverson, Clarke and Moniz-Cook2016). However, a longitudinal qualitative approach focusing on living well may offer more nuanced insights into quality of life and individual experiences of living with dementia, and which of the various influences on living well reported retain the most significance for living well with dementia over time.
An additional strand to longitudinal research on living well for people with dementia is change over time and adaptation, and if or how they maintain continuity in their lives. ‘Change’ itself can be regarded as a transition which is dynamic and ongoing (Crafter and Maunder Reference Crafter and Maunder2012). For example, ‘change’ as a process is encompassed in continuity theory in ‘normal’ ageing, where ‘continuity’ is regarded as subjective and itself as a strategy for adaptation, where ‘continuity is not the opposite of change’ (Atchley Reference Atchley1989, 184). Framed by their ‘continuity maintenance’ approach to psychosocial adaptation in dementia (Lim and Song Reference Lim and Song2019), these authors’ rapid realist review suggests how continuity may be sustained by maintaining personal and social identity, daily activities and a familiar environment (Lim and Song Reference Lim and Song2020). In dementia, multiple strategies for adaptation and maintaining continuity have been reported qualitatively, where emotional, cognitive and behavioural coping strategies include optimism, cognitive reappraisal and altering routines (Górska et al. Reference Górska, Forsyth and Maciver2018). Again, the importance of meaningful participation as a mechanism for supporting adaptation has been highlighted (Phinney et al. Reference Phinney, Chaudhury and O’Connor2007), where key contextual factors for participation include family and important others as well as formal services and local communities (Górska et al. Reference Górska, Maciver and Forsyth2021). However, much of this qualitative research is cross-sectional only, so that longitudinal qualitative accounts are needed to explore potential shifts in accounts of psychological coping and adaptation to dementia, and how these may relate to living well with the condition over time. In relation to continuity and change, longitudinal qualitative analyses are of particular value (Hollstein Reference Hollstein2021; Neale Reference Neale2016; Saldaña Reference Saldaña2003).
Focusing on continuity, change and ‘living well’ over time, the current study uses longitudinal qualitative data from semi-structured interviews with older people with mild-to-moderate dementia to explore whether this can provide insights which address the gaps in available evidence. The aim of this qualitative component of the IDEAL cohort study was to gauge what is important for ‘living well’ with mild-to-moderate dementia, and to explore experiences of continuity, change and adaptation in participants’ accounts over time.
Methodological approach
Study design and ethics
This qualitative study reports analyses of interview data gathered from people living with dementia who participated in the IDEAL cohort study. The aim of the qualitative component was to complement and enrich understanding gained from the IDEAL quantitative findings (see the Ethical Standards section for details of ethical approvals). Because of the longitudinal aspect of the study, we were also cognisant of corresponding ethical issues such as temporality, ensuring anonymity when reporting due to the volume of data collected, and the need to counter the pre-existing researcher-researched relationship by reiterating participants’ right to refuse a second interview.
Sampling and recruitment
People living in the community with a clinical diagnosis of dementia and in the mild-to-moderate stages, as indicated by an MMSE (Mini-Mental State Examination) score of 15 or above (Folstein et al. Reference Folstein, Folstein and McHugh1975), were recruited to the IDEAL cohort study via UK Research Networks across 29 sites in England, Scotland and Wales. Potential participants were identified through National Health Service memory services and other specialist clinics and the online UK Join Dementia Research portal, www.joindementiaresearch,nihr.uk. Recruitment was from 2014 to 2016, with participants followed at yearly or twice-yearly intervals for up to six time-points. Trained researchers had assessed participants’ capacity to consent using an ethically approved protocol for the cohort study, based on criteria set out in the Mental Capacity Act (2005), the Adults with Incapacity (Scotland) Act (2000) and the Mental Capacity Act Code of Practice (2005), with this code of practice based on four indicators of impairment: understanding, retaining information, weighing information and communicating decisions. All interviewees were able to provide informed consent at both interview time-points, with ongoing consent monitoring (Dewing Reference Dewing2008) also implemented during each of the two interviews. For the qualitative study, a maximum variation sample (Patton Reference Patton2014) was drawn from members of the IDEAL cohort study with diagnoses of Alzheimer’s, vascular or mixed dementia diagnosed at age 65 or above after Time 1 and Time 2 survey data had been collected.
We aimed to recruit 20 participants and to select interviewees based on evidence of positive or negative change in quality of life between these two time-points (2014–2015) using a reliable change index calculated in an earlier study (Clare et al. Reference Clare, Woods, Nelis, Martyr, Marková, Roth, Whitaker and Morris2014). In addition, the maximum variation sample considered gender, urban and rural location and socio-economic background, based on income and previous occupations. Individuals with an MMSE score lower than 15 were ineligible to take part. To ensure a homogenous sample, people with rare dementia types or with young-onset dementia were not included in the qualitative sample at this stage because we had surmised that their understanding and experiences of living with dementia may differ from those with the more common forms of the condition. However, the diagnosis of one participant was changed to frontotemporal dementia after the interviews were conducted, and these data were retained in the analyses because her experiences were not dissimilar from those of other interviewees in the dataset.
Longitudinal, semi-structured interviews
The interview schedule for the first set of semi-structured interviews focused on ‘living well’ with dementia and reflection on any positive or negative changes due to the condition (see Supplementary Material 1). The topics were: experience of change, home and activities, neighbourhood, social participation/outdoor activities, family and relationships, wider networks, services and support, and change and identity. In addition, sociograms, that is, visual representations of how people perceived their social networks, were used as ‘talking tools’ to facilitate discussion of family, community connections and relationships with service providers (Ryan et al. Reference Ryan, Mulholland and Agoston2014). Although we had originally planned to analyse the sociograms quantitatively (Tubaro et al. Reference Tubaro, Ryan and D’angelo2016), it was apparent from the first interviews that this would have been of little value as most interviewees misinterpreted completion of the sociograms as needing to relate to the geographical proximity of family and friends rather than to the perceived closeness of such relationships or merged both approaches in their responses. Consequently, sociogram analyses were not completed, nor was sociogram completion repeated during the follow-up interviews.
The interview schedule for the follow-up, second set of semi-structured interviews focused on change in ‘living well’ since the first interview and whether interviewees felt that any aspects of their lives had changed (see Supplementary Material 2). The interview schedule covered the same topics but with the addition of more social aspects of living well such as views on dementia-friendly communities. Interviewees’ first interview accounts were also used to prompt discussion. Sociogram completion was not repeated. Three of the second interviews were joint interviews with a family member but with the focus remaining on the experience of the person with dementia; this was because the participants had more difficulty engaging in the interview at this second time-point. During both sets of interviews, various potential psycho-social aspects of continuity, change and ‘living well’ were explored, including neighbourhood and wider networks, services and support, as well as prospective change in identity: at Time 1 (T1) in 2017, reflecting back over their experience of dementia to date, and at Time 2 (T2), one year later in 2018, reflecting on potential change since the first interview. First and follow-up interviews were conducted by the same interviewer (AH), with first interviews lasting from 36 to 100 minutes, second interviews from 25 to 72 minutes and joint second interviews up to 107 minutes.
Longitudinal, qualitative analyses
Longitudinal thematic analyses were conducted (Derrington Reference Derrington2019; Neale Reference Neale2020) and completed diachronically after both sets of data collection (Nevedal et al. Reference Nevedal, Ayalon and Briller2019). To facilitate thorough familiarisation and data management, all interviews were summarised and represented in tabular format by SS, which enabled an overview of the data as a whole. Through the familiarisation process, first and second interview content was contrasted, and key notes on content of potential analytic interest for changes in living well were also noted in the table. In this way, focus was on the longitudinal aspect from the start of the analytic process. Thematic analysis is in six stages: familiarisation, coding, generating initial themes, reviewing themes, defining and naming themes, and writing up (Braun and Clarke Reference Braun and Clarke2006; Clarke and Braun Reference Clarke and Braun2021). The inductive, thematic analyses were facilitated using NVivo qualitative software (NVivo 2020), where first interview codes were also applied to the second interviews but additional codes added as needed. Codes were then assimilated into initial themes. The thematic analysis process was adapted in accordance with the longitudinal approach, where inductive thematic analyses at the first and second time-points were compared across the entire dataset.
To ensure that individual accounts had not become lost within the volume of data, themes were also compared narratively with individual cases (Thomson and Holland Reference Thomson and Holland2003) to ensure an appropriate fit before themes were finalised. This enabled ‘conceptual scaffolding’ (Neale Reference Neale2016, 110) and understanding of both group and individual experiences (Tuthill et al. Reference Tuthill, Maltby, DiClemente and Pellowski2020) in relation to living well and change over time. Rather than disregarding the contribution to the study of three interviewees who were not re-interviewed, we included their data in developing the first interview codes. Familiarisation with a sample of the interviews by CP as well as prolonged engagement with the data and regular, ongoing discussion of the thematic analyses by SS and CP facilitated trustworthiness (Nowell et al. Reference Nowell, Norris, White and Moules2017). The final two themes and corresponding subthemes across both time-points were discussed with IDEAL team members and with our Patient and Public Involvement (PPI) group, known as the ALWAYs (Action on Living Well: Asking You) group, with the latter also concurring with our analyses. However, because of a large time gap between data collection and analyses due to team member changes, respondent validation with interviewees themselves was not conducted. (IDEAL data were deposited with the UK data archive in April 2020. Details of how to access the data can be found here: https://reshare.ukdataservice.ac.uk/854317/).
Findings
Twenty people with dementia were recruited for the first qualitative interview in 2016, with 17 remaining in the study for the second interview one year later in 2017; two withdrew due to illness and hospitalisation, and one had died. The 20 interviewees ranged in age from 65 to 86 at the time of the first interview; 10 were male and 10 female; and all but three were living with a partner (see Table 1). Fifteen interviewees had Alzheimer’s, two vascular dementia, two mixed type (Alzheimer’s and vascular dementia) and one frontotemporal dementia.
Participant sociodemographic and clinical characteristics
a T1 qualitative interviews were conducted in 2017 and T2 qualitative interviews in 2018. No socio-demographic or clinical characteristics data, including MMSE scores, were recorded at these time-points.
b The Mini-Mental State Examination is a measure of cognitive function with a score range of 0–30 points.
Overall, people with dementia discussed little decline in their dementia symptoms over one year and therefore very little change, although decline over time was more apparent for some interviewees than others. Worsening co-morbid conditions such as arthritis and COPD (chronic obstructive pulmonary disorder) were considered more problematic by interviewees than living with dementia, which was largely viewed with frustration only: ‘but other than that, no, life goes on’ (Tom: T1). By their own comparison, individuals were able to live well with dementia but not necessarily with other health conditions which mostly they regarded as separate; only difficulties such as hearing problems seemed to compound the experience of dementia.
Importantly, emphasis was on continuity, where changes due to dementia were present but small and incremental one year on, although no less significant for the individual, and were not perceived as impacting all areas of people’s lives. In terms of supporting living well, how continuity was facilitated over time and change assimilated was linked to two key themes: ‘Continuing participation and meaningful occupation: capability and compartmentalising’ and ‘Maintaining social networks and accommodating changes in social relationships’. One of our interviewees summarised the importance of both key themes for living well: ‘while ever you’re busy and you get on with people, you’re enjoying life. But when one of them things stop, it goes to [the] bottom’ (John: T1). In presenting these themes, accounts are considered across the dataset using pseudonyms but with particular focus on the longitudinal accounts of four interviewees: Jen, Max, Sarah and Tom.
Continuing participation and meaningful occupation: capability and compartmentalising
This theme refers to the importance for maintaining living well over time of striving for continued engagement with interests and everyday tasks, even when these had become more challenging. A key psychological coping strategy to supporting continuity in their lives was individuals’ emphasis on their capabilities to maintain activities in spite of dementia, while circumscribing or compartmentalising specific areas that had become more difficult.
Interviewees emphasised ‘keeping the brain active’ through maintaining hobbies as meaningful occupation or pursuing daily household routines, which some perceived as preventing decline. Continuing participation in such activities was imperative for living well. Max did not let dementia deter him and spoke about his full day of activities, including housework, gardening and a new artistic interest he had pursued since his dementia diagnosis and now taught. By his second interview, Max had also taken up carpentry again: ‘I don’t think it matters what the activity is … anything. Everybody can find a hobby … You must challenge yourself. Every day, you’ve got to get up and think, “what can I do?”’ (Max: T2). Striving for continued engagement and meaningful occupation was important for living well for other interviewees such as Jen who, since her first interview, was still able to pursue her previous activities and who had also started voluntary work: ‘Um, living well, yes. Doing all the things I do: singing, art, playing badminton. I mean, I’m, I’m lucky. I can do all the things that I enjoy doing’ (Jen: T2).
It is interesting to observe that these interviewees’ accounts were not characterised by loss of activities but rather by continuation of past interests and even engagement with new ones, therein countering assumptions that dementia is always characterised by loss over time. For Max and Jen, only their sleep problems had worsened since their first interviews. By contrast, other interviewees who felt they were not doing something purposeful each day or who had given up past interests struggled to maintain living well. Fred missed work since retirement and needed to keep busy with activities every day: ‘once I lose them things, I get so miserable’ (Fred: T1). For Grace, giving up dancing when local classes stopped, her only interest and when she had been happiest, was a huge loss for her: ‘I used to dance two or three nights a week. I always got dressed up. Yeah, I miss that, like’ (Grace: T2).
In addition to continued engagement with interests and everyday tasks for living well, a key psychological strategy was emphasis on capabilities rather than impairments due to dementia, where individuals compartmentalised areas of difficulty so that these did not dominate their lives. Jen preferred the term aphasia (word-finding difficulties), saying that ‘dementia sounds like you’re going nuts’ (Jen: T1). She discussed how her aphasia was only a problem when taking to people but that she could still pursue her interests such as working on her allotment: ‘Yes, I mean there’s no problem with doing things. And when I’m doing things, I can forget that I haven’t got a good memory because it doesn’t matter anymore’ (Jen: T2).
Compartmentalising, as a key psychological coping strategy, was apparent across several interviewees’ accounts, where interviewees emphasised how only some but not all aspects of their lives were affected by dementia:
Er, well like I say everything else is fine, it’s just the lack of memory you know that’s what’s frustrating, that’s what is annoying as well. But apart from that, I can cope with everything you know doing the shopping, doing the housework and I can look after myself you know, shampoo my hair or whatever. I don’t have any problems like that. It’s just remembering things. (Grace: T1)
The easiest way is to go on walks or do the gardening or not meet people and then you’re doing things you want to do and it’s not affected. I mean I can still play codebreakers and things, it’s not affecting my ability to do these things so … so long as I am doing those things, I am quite happy. (Susan: T1)
By contrast, some interviewees appeared to have lost confidence, with their accounts reflecting change and doubting ability, or they had entirely given up interests and daily tasks, for example reading books or magazines, shopping and cooking: ‘Um, and I feel inadequate, I suppose. Um, because I can’t do some of the things that I always used to do and never ever thought about. Um, so that’s … that’s my grievance with this’ (Pam: T2). Some interviewees made temporal self-comparisons with past proficiencies: ‘it saddens me a bit really that I realise I am not as mentally astute as I used to be … I think I probably rely on [my husband] quite a lot’ (Sheila: T1).
Where interviewees had seemed to lose self-confidence, it was not always clear where this had stemmed from, that is, whether from worsening symptoms or co-morbidities or perhaps from social expectations of what people with dementia are able to do. In a very few interviewees’ accounts, there also seemed to be physical representations of previous interests that were now being avoided, perhaps due to lack of self-motivation. One participant still had her art materials but had not painted for three years: ‘to be perfectly honest I’ve got awfully lazy, and I sit watching the television quite a bit’ (Janet: T1). Another interviewee had a new printing press which had remained unused for six years, saying that it was ‘almost too nice’ to use, and there was ‘not the same impetus’ to do his artwork (Bob: T1). By their second interviews, both Janet and Bob had still not re-engaged with these past interests.
In our analyses, compartmentalising was observed as a narrative device, where most interviewees described their experiences by emphasising their capabilities rather than their impairments due to dementia, that is, ‘I can still do X and Y; only Z is affected’. Compartmentalising, as a psychological coping strategy, may serve a function in supporting adaptation to dementia by emphasising retained capabilities and avoiding cognitive challenges, for example not wanting to meet new people or avoiding activities to prevent comparisons between current and past proficiencies. By compartmentalising, interviewees were striving to accommodate dementia within their everyday lives, at least during these early stages of their dementia trajectory. Here, there is also a dilemma for living well. If continued engagement with everyday tasks and past or new interests is important for living well over time, individuals who do not compartmentalise and avoid participation because they doubt their capabilities may be protecting themselves psychologically but at the same time missing the benefits for living well that sustaining such activities may afford.
Maintaining social networks and accommodating changes in social relationships
The second theme that is important for continued living well concerns sustaining locally embedded social networks over time within supportive communities, particularly family or friends living close by, as well as managing the psychological impacts of changes in social relationships, for example due to awareness of gradual shifts from a spousal relationship to more the dynamic of a partner as carer. The importance of strong family relationships for living well were apparent, which largely remained unchanged one year on, particularly where such social networks were embedded locally. For example, for some interviewees, their family was a short driving distance away and so visited regularly, like for Tom who saw his grandchildren every weekend; others whose family and friends lived at a distance were more socially isolated, even though they were in regular telephone contact with their families.
Like several of our interviewees, Tom and Jen had both lived in their respective homes for several decades and felt supported by long-standing neighbours and within the local community. Relationships with neighbours were also mutually supportive, where some interviewees helped their neighbours who were in poor health. Across both interview time-points, most interviewees did not report experiencing stigma due to disclosing their diagnosis, although some spoke of misunderstandings about dementia. For example, by their second interviews, Jen and Sarah had been irritated by the dismissive reaction to their condition on disclosing this to other older people who, perhaps to ‘normalise’ dementia, had said that they also had memory problems: ‘[they] wipe it away sort of thing’ (Sarah: T2).
Maintaining social networks for living well over time was difficult, where interviewees were not seeing people as often due to their own physical health problems or those of their family and friends. With advancing age, interviewees also reported loss of family and friends due to bereavement.
Dementia could also have direct impacts on social interaction, for example where individuals were managing aphasia and hence found it difficult to engage socially: ‘I do sometimes feel left out for that reason … I’m not noticed’ (Janet: T1). By her second interview, Jen was concerned that eventually her aphasia may result in her getting to the point where she could no longer speak to anyone so she would be more dependent on her husband. Some interviewees like Sarah were at risk of loneliness due to both aphasia and hearing difficulties, which Sarah said meant that she did not have a lot of friends. Sarah lived with her daughter and her daughter’s partner but was alone all day while they were at work. She was also dependent on her daughter to drive her to see friends. However, social networks and relationships were imperative to her, such as meeting people and going out for a meal. By her second interview, social relationships were still central to her for living well, with her highlight now a weekly visit from a friend: ‘it’s exactly the same, yeah. Yes, I love it when people come to see me’ (Sarah: T2).
Likewise, Terry wanted to forge new friendships himself, having noticed his wife’s friendships and wanting something similar for himself: ‘I haven’t got anyone saying you’re my friend’ (Terry: T1). By his second interview, Terry had started going to watch football, where he had begun to develop more male friendships, which had made a big difference to his life: ‘I mean one of the big fear is … was that I had no one except my poor [wife] to talk to’ (Terry: T2).
Therefore, even when people with dementia live with a partner, it cannot be assumed that they do not feel lonely. Some interviewees attended dementia groups, enjoying the peer support this offered: ‘it’s the company, everybody in the same boat’ (Pam: T2). Others, like Ria, disliked such groups, preferring to pay a formal carer to take her out and the companionship this afforded.
Maintaining social relationships was imperative for living well over time as well as managing the direct impacts of dementia, such as aphasia, on social interaction. Coping with changes in social, particularly spousal, relationships was also apparent for some interviewees, although most interview accounts suggested that the relationship with the family member had largely remained unaltered over time, with any physical or dementia-related decline accommodated within the spousal or filial relationship. Even the interviewee discussing her aggressive outbursts due to dementia described how these were circumscribed within her marriage: ‘it’s a little part of our relationship that’s chipped out the whole lot’ (Pam: T2).
Greater shifts in the relationship were apparent in some interviews, with one interviewee saying that his wife now organised days out, which was still the case by his second interview: ‘where I was the leading partner, and now I’m not the leading partner’ (Stan: T1). Notably, by their second interview, two interviewees seemed to have become increasingly dependent on their spouses for their social interaction; one was hoping her husband would retire so they could spend more time together (Pam: T2) and the other wanted her husband to stop going to football matches, to which he had interjected ‘that’s the only thing I’ve got in life, other than looking after you’ (Tina–husband: T2).
Some interviewees were aware that the relationship with their partner had shifted away from a spousal relationship towards more the dynamic of a partner as carer, although most avoided stating this explicitly, perhaps to avoid the psychological consequences such recognition might bring. Only one interviewee called his wife his ‘carer’ or ‘nurse-carer’ (Ian: T1 and T2), although individuals’ increasing care needs and declining physical health were apparent in some accounts, where some interviewees had been in respite care since their first interview. One interviewee needed more support by his second interview, previously having said that he was ‘lost’ without his wife and ‘terrified’ of going anywhere without her: ‘I’m not allowed out on my own’ (Ed: T1). Since his first interview, for Tom, there was a clear shift in perception of the relationship with his wife: ‘Well, I think I feel for [my wife] at times, you know. With my brain not working properly sometimes, it gets frustrating for her, and I feel for her’ (Tom: T2). In comparison with his first interview, where Tom and his wife had just been on holiday abroad together, by his second, Tom’s wife was about to go on holiday without him, leaving their daughter to care for him: ‘it’ll give [my wife] a break from me’ (Tom: T2). Therefore, in addition to maintaining social networks and relationships, which were discussed explicitly as important for living well over time, managing the psychological impacts of accommodating shifts from spousal to carer relationships, where people with dementia are aware of these, is also of significance.
Discussion
This longitudinal qualitative study has provided insights into the experiences of older people living with mild-to-moderate dementia over time. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. Changes, where present, were small, although no less significant for the person with dementia. Striving for continued engagement and meaningful occupation was important for living well over time, including the pursuit of new as well as past interests, countering assumptions that dementia is always conditioned by loss. Interviewees emphasised their capabilities, compartmentalising specific areas that had become more challenging as a key psychological strategy to support adaptation; conversely, others doubted their abilities, including by making temporal self-comparisons with past proficiencies. In addition, sustaining locally embedded social networks over time was important for maintaining living well, such as family or friends continuing to live close by, as well as individuals managing the psychological impacts of changes in spousal relationships.
Both longitudinal themes resonate with previous research on the importance of meaningful occupation (Nyman and Szymczynska Reference Nyman and Szymczynska2016) and connectedness to family and relationships (O’Rourke et al. Reference O’Rourke, Duggleby, Fraser and Jerke2015) for living well and quality of life in dementia. Meaningful activities are central to continuity in the lives of people with dementia (Phinney et al. Reference Phinney, Chaudhury and O’Connor2007) as well as an important aspect of expressing and maintaining identity (Han et al. Reference Han, Radel, McDowd and Sabata2016; Stapley et al. Reference Stapley, Pentecost, Collins, Quinn, Dawson, Morris, Sabatini, Thom and Clare2023; Tierney and Beattie Reference Tierney and Beattie2020). In addition, meaningful occupation and valued activities are central to supporting agency in dementia (Chung et al. Reference Chung, Ellis-Hill and Coleman2017). Our qualitative findings complement previous quantitative work from the IDEAL cohort study, from which our interviewees were drawn, and contribute to understanding of what is important for living well with dementia (Quinn et al. Reference Quinn, Pickett, Litherland, Morris, Martyr and Clare2022). However, our longitudinal qualitative work has highlighted what continues to matter over time for people with dementia, and how they adapt to the condition. Cross-sectional analyses of IDEAL quantitative data identified the relevance of adjustment to living with the condition and also continuity in sense of self (Clare et al. Reference Clare, Martyr, Morris and Tippett2020; Clare, Gamble, Martyr, Quinn et al. Reference Clare, Gamble, Martyr, Quinn, Litherland, Morris, Jones and Matthews2022). Longitudinal, quantitative analyses from IDEAL have shown that quality of life scores were stable over time for 89 per cent of IDEAL participants who were followed up after 12 and 24 months (Clare, Gamble, Martyr, Sabatini et al. Reference Clare, Gamble, Martyr, Sabatini, Nelis, Quinn, Pentecost, Victor, Jones, Jones, Knapp, Litherland, Morris, Rusted, Thom, Collins, Henderson and Matthews2022). Supporting previous work (e.g. Pearce et al. Reference Pearce, Clare and Pistrang2002), our qualitative findings perhaps explain why quality of life remains stable, in that people with mild-to-moderate dementia may experience small but incremental changes over time, to which they are able to adapt. Compartmentalisation as the key psychological coping strategy enacted by our interviewees, where they emphasised how only some but not all aspects of their lives were affected by dementia, may be how individuals are able to adapt and maintain continuity in their lives (Atchley Reference Atchley1989).
Moreover, the overarching narrative of continuity and incremental change over time is important to highlight, particularly for people with dementia themselves. Our interviewees’ accounts were characterised not by loss but by the interviewees emphasising their capabilities, what they could still do, their new and past interests, where dementia was impacting some but not all aspects of their lives. Therefore, people with dementia can continue their lives, with agency and independence, accommodating the small, incremental changes that dementia may afford, at least in the earlier stages. This provides further support for ‘tragedy discourse’ counter-narratives focusing on agency and social citizenship (Bartlett and O’Connor Reference Bartlett and O’Connor2010), and the shift towards considering dementia a disability (e.g. Cahill Reference Cahill2022; Shakespeare et al. Reference Shakespeare, Zeilig and Mittler2019). Notably, major changes may be absent in the earlier stages, and therefore understanding and monitoring the minutiae of cumulative change in people’s lives may be of greater import. For example, our work also highlighted the significance of maintaining social networks and relationships but also how small shifts in spousal to carer relationships may be apparent. Where the person with dementia becomes aware of changes in the spousal relationship and relational discontinuity (Riley Reference Riley2019; Riley et al. Reference Riley, Fisher, Hagger, Elliott, Le Serve and Oyebode2013), they may need support to adjust.
However, we are aware of some limitations of our work. Living well in our study is based on the accounts of older people with mild-to-moderate dementia, specifically and largely the more common forms of dementia; also our findings do not reflect the experiences of those with advanced dementia. Re-interviewing participants one year after their first interviews may have been an insufficient time frame for dementia changes relevant to living well to become a significant concern. However, the notion of an optimal time frame for re-interviewing is perhaps complicated by people with dementia adapting to their condition, as with our interviewees. A related point is that, although originally we attempted to incorporate positive or negative change within the sampling, changes in scores on the QoL-AD change in scores on the Quality of Life in Alzheimer’s Disease (QoL-AD) Scale were relatively small, were relatively small, and therefore interviewees were considered as one group. Only in five cases was the change in either direction equal to or greater than the value of the reliable change index, which in fact turned out to be slightly greater in the IDEAL cohort than in the earlier study (Clare, Gamble, Martyr, Sabatini et al. Reference Clare, Gamble, Martyr, Sabatini, Nelis, Quinn, Pentecost, Victor, Jones, Jones, Knapp, Litherland, Morris, Rusted, Thom, Collins, Henderson and Matthews2022). This in itself may support our finding of continuity and small, incremental changes in experiences of living well with dementia, although it is possible that participants with the greatest changes due to the condition may have been more likely to withdraw from the IDEAL cohort study. In future work, recruiting people with dementia and their family members who feel that they are in crisis due to dementia may be difficult but of value.
Analysis was also carried out five years after the first data were collected due to factors including resourcing and the impact of the Covid-19 pandemic; hence, the lead data analyst was not the same person who conducted the interviews. However, our findings regarding continuing participation and meaningful occupation are commensurate with qualitative work conducted during the pandemic, in which the importance of meaningful occupation for people with dementia and their identity was highlighted (Stapley et al. Reference Stapley, Pentecost, Collins, Quinn, Dawson, Morris, Sabatini, Thom and Clare2023). Use of sociograms may have inhibited interaction in the first interview rather than enhancing it, with some interviewees finding this approach difficult, hence this data was not used. In hindsight, photo elicitation techniques or, where possible, ‘walking’ interviews (Bates et al. Reference Bates, McCann, Kaye and Taylor2017; Thomson Reference Thomson2012) may have been more helpful, particularly as interview topics included the home, the neighbourhood and outdoor activities. In addition, there was minimal discussion by interviewees of health care, social care and community resources, and these were not explored in depth in the interviews. Participants were recruited to the IDEAL cohort on the basis of attendance at British memory clinics, and while the proportion of people from minority ethnic groups was consistent with British population estimates, numbers were small; while this explains why the interviewees in the current sample were all White British, it means that further work would be needed to ensure that the perspectives of people from minority ethnic groups are represented. We are aware that including such individuals with dementia and their family members in research, for example, by improving recruitment strategies is imperative not only for their representation but to reduce inequalities in health and social care (Brijnath et al. Reference Brijnath, Croy, Sabates, Thodis, Ellis, de Crespigny, Moxey, Day, Dobson, Elliott and Etherington2022).
Nonetheless, our study has added to the corpus of longitudinal qualitative studies in dementia research. Largely situated within a narrative of continuity and adaptation, our work suggests that small, incremental changes in social relationships and opportunities for meaningful occupation may still afford key areas for support and intervention. Loneliness was apparent for some of our interviewees and was not always mitigated by existing partner relationships or attendance at dementia groups. Our findings serve as a reminder to health and social professionals of the importance of discussion around social supports outside the family carer relationship. Our work also emphasised opportunities for meaningful occupation, therein maintaining valued activities or facilitating new ones. Based on qualitative work in England and Wales with key stakeholders including general practitioners, a structured approach to the post-diagnostic annual dementia review has been suggested which includes discussion of psychological and emotional wellbeing and supporting relationships and meaningful activities (Bamford et al. Reference Bamford, Wheatley, Brunskill, Booi, Allan, Banerjee, Harrison Dening, Manthorpe and Robinson2021). However, such needs may be overlooked where people with dementia are also managing co-morbidities and physical health problems. In addition, activities of daily living may be more the focus in occupational therapy interventions in dementia (Bennett et al. Reference Bennett, Laver, Voigt-Radloff, Letts, Clemson, Graff, Wiseman and Gitlin2019), although in personalised goal-oriented cognitive rehabilitation there has been successful self-reported goal attainment, including engaging in activities and personal projects (Clare et al. Reference Clare, Kudlicka, Oyebode, Jones, Bayer, Leroi, Kopelman, James, Culverwell, Pool, Brand, Henderson, Hoare, Knapp, Morgan-Trimmer, Burns, Corbett, Whitaker and Woods2019). In our study, where interviewees seemed to have lost self-confidence in their valued activities, psycho-social interventions may have value to encourage engagement with and enjoyment of previous and new activities. This again serves to highlight the importance of resourcing such initiatives, although there is limited financial support for social care in the UK, where individuals mostly pay for it themselves (Henderson et al. Reference Henderson, Knapp, Nelis, Quinn, Martyr, Wu, Jones, Victor, Pickett, Hindle, Jones, Kopelman, Matthews, Morris, Rusted, Thom and Clare2019).
Conclusion
In conclusion, this study is one of relatively few longitudinal qualitative projects in dementia research. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. In living well over time, most interviewees emphasised their capabilities and agency in pursuing valued activities, compartmentalising the impacts of dementia as a key psychological coping strategy for adaptation. Maintaining social networks over time was also important as well as managing the psychological impacts of changes in spousal relationships. However, understanding and monitoring incremental changes is still of value; in this way, smaller shifts in living well for people in the earlier stages of dementia are not missed. Therefore, for some people with mild-to-moderate dementia, facilitating social supports and opportunities for meaningful occupation may still afford key areas for interventions to promote living well, where both the preferences of the person with dementia and the adequate resourcing of service provision are paramount.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S0144686X24000333.
Acknowledgements
We would like to acknowledge the support of the following research networks: NIHR Dementias and Neurodegeneration Specialty (DeNDRoN) in England, the Scottish Dementia Clinical Research Network (SDCRN) and Health and Care Research Wales. Linda Clare acknowledges support from the NIHR Applied Research Collaboration South-West Peninsula. We gratefully acknowledge the local principal investigators and researchers involved in participant recruitment and assessment within these networks. We are grateful to the IDEAL study participants for their participation in the study and to members of the ALWAYs group and the Project Advisory Group for their support throughout the study. We are also grateful to Rachel Collins for supporting the work. For the purpose of open access, the authors have applied a Creative Commons Attribution (CC BY) licence to any Author Accepted Manuscript version arising.
Author contributions
SS conducted the longitudinal analyses, and devised and wrote the draft paper. CP took part in ongoing discussions about and agreed the final analyses, provided edits and comments on drafts, and agreed the final version to be published. AH conducted both sets of interviews, discussed the analyses, provided edits and comments on drafts, and agreed the final version to be published. MR accessed participant socio-demographic and clinical characteristics, provided edits and comments on drafts, and agreed the final version to be published. IRJ, RM, CQ, JT and LC devised the study, discussed the analyses, provided edits and comments on drafts, and agreed the final version to be published.
Financial support
‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia – the IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) through grant ES/L001853/2. Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, J.A. Pickett, C. Quinn, J. Rusted and J. Thom. The ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia – the IDEAL-2 study’ is funded by the Alzheimer’s Society, grant number 348, AS-PR2-16-001. Investigators: L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, C. Quinn and J. Rusted. This report is independent research supported by the National Institute for Health and Care Research Applied Research Collaboration South-West Peninsula. The views expressed in this publication are those of the author(s) and not necessarily those of the ESRC, UKRI, the NIHR, the Department of Health and Social Care, the National Health Service or the Alzheimer’s Society. The support of the ESRC, the NIHR and the Alzheimer’s Society is gratefully acknowledged.
Competing interests
None declared.
Ethical standards
The Health Research Authority (HRA) granted approval for this study. ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia – the IDEAL study’ was approved by the Wales Research Ethics Committee 5 (reference 13/WA/0405) and the Ethics Committee of the School of Psychology, Bangor University (reference 2014-11684). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia – the IDEAL-2 study’ was approved by the Wales Research Ethics Committee 5 (reference 18/WA/0111) and the Scotland A Research Ethics Committee (reference 18/SS/0037). Both IDEAL and IDEAL-2 are registered with the UK Clinical Research Network (UKCRN), numbers 16593 and 37955, respectively.
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