Stress as Experienced by People with Dementia: An Interpretative Phenomenological Analysis

Abstract

Health and social care research on stress in dementia has predominantly considered the stress experienced by family and professional carers. Focus on the person with dementia has frequently laid emphasis on the impact of stress-related behaviour on others and how such behaviour might be ‘managed’. This paper describes a qualitative study which gives voice to people with dementia on the subject of stress and responds to the need for a better understanding of stress as it is experienced by people with dementia themselves. An interpretative phenomenological analysis was conducted on data collected from a purposive sample of people diagnosed with varying types of dementia from across Scotland. Discussions across five focus groups consisting of 21 participants with dementia in total generated data which was audio and video recorded, and analysed thematically. Five key themes emerged, described in the participants’ own words, which were: (1) ‘Something’s torn, your life’s torn’; (2) ‘Families can bring stress’; (3) ‘It’s the stress of living with dementia’; (4) ‘A whole new set of rules’; and (5) ‘It’s our lives and we’ll get it under control ourselves’. These themes reflect experiences of loss, challenges to one’s sense of self, relationship dynamics, living with the symptoms of dementia, learning to do things differently and establishing coping mechanisms that provide control. Study participants illustrated individual potential for adapting and coping with some of the most stressful aspects of living with dementia, challenging assumptions of inevitable fixed decline and progressive vulnerability to stress. Participants describe a process of recovery in their perceptions of self-worth, purpose and value in life following diagnosis.

Keywords

dementia stress coping relationships recovery phenomenology

Introduction

Dementia gives rise to a diverse range of difficulties in cognitive and physical functions over a frequently long, progressive trajectory (Kydd & Sharp, 2016). Supporting people to live well with dementia relies on developing a greater understanding of the complex interplay between its neurological basis and the influence of biography, health, psychology, relationships and environment (Hughes, Louw, & Sabat, 2006; Kitwood, 1990). The contribution of this study to such an understanding lies in learning how people with dementia make meaning from their experiences of stress.

Stress and dementia

Previous studies on stress and dementia have ranged widely in focus; from early life stress as a potential risk factor for dementia in later life (Crowe, Andel, Pedersen, & Gatz, 2007; Doyle, Dunt, & Morris, 2014; Fratiglioni, Paillard-Borg, & Winblad, 2004) to the impact of environmental modifications on stress responses (McCloskey, 2004). Few consider the perspectives of people with dementia specifically, most considering stress-related behavioural manifestations and their impact upon carers (Hall & Buckwalter, 1987; Judge, Menne, & Whitlatch, 2010; Ostwald, Duggleby, & Hepburn, 2002). Little is known about how people with dementia experience stress events or the coping strategies they adopt (de Souza-Talarico, Chaves, Nitrini, & Caramelli, 2008, 2009).

This paper describes research undertaken in Scotland on the views and perceptions of people with dementia and their experience of stress. The research questions considered were:

How do people with dementia perceive their experiences of stress?

How do people with dementia cope with the stress they experience?

The transactional model of stress and coping by Lazarus and Folkman (1984) provides theoretical underpinning. This model views person and environment within a dynamic, reciprocal relationship which results in a new relational meaning. The person’s grasp of a specific situation in terms of its meaning for ‘self’ is significant—stress resulting when that meaning is interpreted as signalling loss, challenge, threat, or harm (Lazarus & Folkman, 1984). The Lazarus and Folkman (1984) model of stress and coping lays emphasis on perception and meaning and acknowledges multiple influences at play.

Methodology

The study is an interpretative phenomenological analysis (IPA) (Smith, Flowers, & Larkin, 2009). The perceptions of participants are elicited through a dynamic, interactive process in which the researcher’s own understanding plays a part in the interpretative activity (Clare, 2003). IPA is described as operating in the complex middle ground between empiricism, with its realistic, objective stance, and constructionism with its relativist view of the world as one constructed through language, meaning and social practice (Larkin, 2013).

The interpretation process is grounded in how participants make sense of their experiences and what they have come to believe about those experiences (Larkin, Watts, & Clifton, 2006; Smith, 2004). As with other qualitative approaches, IPA assumes links between self-reported experience and underlying perception, even if this is not straightforward (Clare, 2003). The study recognises people with dementia as active, responsive agents in their own lives and continually seeking meaning in their experiences (Sabat, 2001; Sabat & Harre, 1994). Capturing these experiences in participants’ own words aims to minimise any potential for assumptions and to understand the experience of stress from the real-life perspectives of people living with dementia.

Method: Focus groups

Focus groups were felt to have the potential to generate rich data through the communicative and emotional support of being with others with similar difficulties (Morgan & Krueger, 1993). Decisions about location, timing and support were addressed in full consultation with individual participants. Relatives, friends or professional support staff were welcomed at the invitation of the participants with dementia but catered for in nearby accommodation and did not take part in group discussions. This meant that if any participant should become distressed, a support person of their own choosing was on hand, should they wish to remove themselves temporarily or permanently from proceedings.

Participants

Twenty-one participants took part from different locations in Scotland. All participants had received a formal diagnosis of dementia but no discrimination was made as to the specific cause, age or gender of participants, nor time since diagnosis. Seven participants lived alone, one with a sibling, the remaining thirteen with spouses or partners. An account of participant characteristics can be found in Table 1.

Table 1.

Participant characteristics.

Focus group	Male	Female	Mean age	AD	VD	Mixed	Time since diagnosis –range across the group
1	2	2	63.7	2	2		3 months – 5 years
2	3	5	62.9	4	3	1	6 months – 4 years
3	3	0	67.3	2	1		8 months – 3 years
4	1	2	64	3			10 months – 4 years
5	1	2	71.6	2	1		1 year – 3 years

AD: Alzheimer’s disease; VD: Vascular Mixed.

A purposive sample was drawn from networks where people with dementia came together and openly discussed their diagnosis. These included support groups, campaigning groups and dementia cafés. It was important to establish that the nature of the study was sympathetic to the principles of these networks and consider its relevance from the perspective of prospective participants (McKillop & Wilkinson, 2004). Opportunities were sought to describe the project in an accessible way to these networks and invite participation of people with dementia who felt they wished to share their experiences.

Although all participants could communicate verbally, fluctuations in all aspects of cognitive and functional ability in dementia demanded on-going alertness to participant well-being throughout the data collection process and beyond. Focus groups were supported by an objective, experienced, dementia practitioner with responsibility for observing participants for any signs of distress and supporting them accordingly (even if this meant discontinuing involvement in the process).

Ethical considerations

Central ethical considerations pertained to:

The rights of people with dementia to be involved in research and be supported to do so in a meaningful way.

Providing accessible information to optimise opportunity for people with dementia to comprehend what they are consenting to (see below).

Capacity of individuals to provide informed consent.

Gaining ethical approval to conduct a study involving people with dementia.

Considering risks of harm and benefit for participants engaged in conversations around potentially emotionally sensitive topics (Pesonen, Remes, & Isola, 2011; Royal College of Nursing, 2009).

Providing accessible information was a consideration throughout the process of recruiting participants to the study. In presenting information to groups from which participants were to be drawn, the preferred format was discussed with facilitators in advance. In this way, the information could be responsive to known specific needs within the group, such as members with visual or hearing difficulties, as well as applying broader enabling principles. A blend of visual and auditory information was provided, keeping language simple, writing in clear large font with good background contrast and providing matching visual cues to key points which were repeated. Immediately following each presentation, an informal break was scheduled which enabled details to be discussed with those who expressed an interest in participating in the study. This approach removed any potential pressure to participate that might be felt in the group situation and permitted personally preferred modes of communicative contact to be explored. The latter proved to be a helpful approach with a broad range of preferences expressed by potential participants, such as requests for a specific size and type of font on written communications, preferences for letters, phone calls or emails (or a combination) or a specific colour of paper which best enabled reading. Some potential participants were happy for the sole contact to be made with themselves and others requested the ‘back-up’ of shared communications with a family member or support worker.

All those who expressed an interest were included as potential participants and with the exception of one person whose health deteriorated and who was hospitalised prior to data collection, all went on to become active participants in the study. Although participants expressed interest in being involved in the research, it remained important to respect the time, physical and emotional effort it may take for someone with dementia to engage with the process. If attendees did not volunteer their interest in being study participants, nor ask for further information, their reasons for doing so were not explored. Although such a discussion could have elicited information of interest to the study, it was considered there was a risk of this being perceived as coercive and therefore not pursued.

Ethical approval for the study was provided by Scotland ‘A’ Research Ethics Committee which considers studies where issues of capacity to consent may exist under the requirements of the Adults with Incapacity (Scotland) Act 2000. In compliance with the conditions within which ethical approval was provided, all participants were deemed to have capacity to provide informed consent as defined by the Adults with Incapacity (Scotland) Act (2000). Capacity to make decisions is recognised to be influenced by multiple factors and considered neither ‘fixed’ nor an ‘all or nothing’ state. Approaches to informing participants about the study, their role and acquiring their consent to participate took account of these factors. Communication methods adopted were in accordance with individual participant preferences. Consent was viewed as a continuing process, reaffirmed on each contact with participants.

Limitations of the study

Participants were drawn from pre-existing networks and although this contributes to the homogeneous nature desired in IPA, some participants already knew each other and this may have had some influence on the results. Some of the richest data emerged, as anticipated, from exchanges between participants. However, it is not possible to say what participants would have expressed had they been interviewed alone. Participants required no more than a moderate level of support, reflecting their abilities at the time. The perspectives of participants are theirs alone, at the time, situation and conditions within which this study was conducted.

Data collection and analysis

Focus group discussions were audio and video recorded, then transcribed verbatim with participant anonymity secured. Accounts were re-read frequently to become fully familiar with the data. Video recordings of group exchanges assisted in identifying clearly all non-verbal communications.

The analytical process in IPA moves from the ‘particular’ to the ‘shared’ and from phenomenological to interpretative (Smith et al., 2009). Detailed notes were made on transcripts – asking questions of the data of a phenomenological nature and identifying aspects of experiential interest from the accounts. Through line by line analysis, notes were ‘coded’ into emerging themes, initially free and open, gradually more specific and grouped. The exact words and phrases of participants constituted thematic headings to maintain focus on their perspectives. Emerging themes captured patterns of meaning within the data and a process of abstraction identified patterns between the emergent themes. This began to provide a sense of ‘super-ordinate’ themes (Smith et al., 2009).

These processes were repeated with the transcript of each focus group independently and then in relation to those previous, creating an iterative process. As the volume of data increased, use of the qualitative research data management tool NVivo assisted in organisation. This enabled a hierarchical structure of identified themes, providing a picture of the number of times a theme emerged within each group, across all groups and from individual participants. This process, described by Smith et al. (2009) as ‘numeration’, is one way of indicating the relative importance of emergent themes to participants. A second researcher enabled a process of defending analytical interpretations made, supporting transparency and coherence, which assisted the in-depth interpretative nature of the process.

Findings

Data analysis generated 5 super-ordinate (or key themes) and a total of 20 linked subordinate themes. Super-ordinate themes identified were: ‘Something’s torn, your life’s torn’; ‘Families can bring stress’; ‘It’s the stress of living with dementia’; ‘A whole new set of rules’; and ‘It’s our lives and we’ll get it under control ourselves’. Findings are summarised and presented under these headings with excerpts from the transcripts to illustrate key points.

Theme 1: ‘Something’s torn, your life is torn’

This theme describes stress in association with perceptions of loss related to having dementia. Loss is described in terms of a disrupted personal life narrative, disconnection, altered perceptions of self, roles, relationships abilities and futures. Associate grief is described both in relation to the immediate changes being experienced and in anticipation of those to come. Jimmy expresses his feelings about his wife signing for family purchases rather than himself:

What I’m saying is it gives you a whole jerk of reality … and all of a sudden – your world (bangs fist on table) something’s torn – your life’s torn! (Jimmy)

Disruption to life’s pattern and associated losses are highlighted through such day to day activities and within personal roles of workplace and family. Signifiers of loss lie in changes such as altered personal skills, reduced contact from friends and loss of driving ability. Such losses are associated with perceptions of a profoundly altered sense of self:

It’s very, em, it’s the sense of loss – you know – and it’s grieving for the loss of that person that was … (Arlene)

Although different terms are used, a sense of something traumatic having happened to participants and their lives is expressed, in addition to changes recognised within themselves:

It’s been stolen from you – and you don’t know where it’s gone – and you don’t know who’s got it … (Ian)

Appreciating life may never be the same again brings many uncertainties and questions:

I don't see any time that I would be told start again - everything will be alright - I don't think that will happen … I don't think your ‘thing up there' (points to his head) operates that way and allows you to have a normal, a normal way of living. (Fred)

The following extract illustrates how a specific moment confronts Ian with changes in himself:

… a thesis that I’d done … I looked at this and it nearly broke my heart because I could hardly even pronounce the bloody words now … (voice breaks). It still affects me now and I realise you, that person there is dead, gone, stolen, ripped out - that guy doesn’t exist anymore, he’s gone. (Ian)

Sandra’s trauma is palpable in her description of losing skills she perceives to be the focus of her life:

… all these things I can’t do … that was my life and so that’s what I want, I want to have that, I can’t – I’m aware of that – it’s about – what’s that word? ‘stress’ its – the stress is, I think eh, it’s the big problem for me. I’m not able so far to accept, em, that I’m not the person that I was – because I’m not. (Sandra)

Sandra received her diagnosis recently and rejects positivity from others that she will come through the distress currently experienced:

… this bugs me when … they say, ‘You’ll have a new life'. I can’t – if I wanted to …I can’t … That’s it! (Sandra)

Many participants describe fighting against changes in themselves, trying to sustain what was. The ‘fight’ itself is exhausting. Anthony describes attempts to control his behaviour and hide changes he recognises in himself. It is important to him to delay when others will see him differently:

I accept the fact in … time it will be noticed but I hope I can go on a bit like this so that people – to me – are the same – they haven’t changed and I hope they haven’t recognised that I’m changing … So, I’m doing my best to keep myself under control. (Anthony)

Theme 2: Families can bring stress

This captures stress associated with altered close family relationships, especially shifts in power and loss of reciprocity. There is no attempt here to analyse the precise nature of situations referred to, or assess the appropriateness of individual positions. Rather, participants are supported to tell their story as they choose, the focus on their perceptions and feelings. Stress is described in association with changes in behaviour of family members towards them since diagnosis. Changes may challenge self-concept and are expressed in terms of being ‘a prisoner’ of (generally) well-intentioned protectionist behaviour:

… ‘Give us a break’ because you start to become a prisoner of concern … It’s like handcuffing you with emotion. You know, you can hardly breathe sometimes and that brings a lot of stress. (Ian)

Over-protectiveness is perceived in excess monitoring and tensions around risk perceptions. Participants describe this as undermining self-esteem and independence;

… I've understood it - this illness - you be as normal as you can be, for as long as you can, right? She's taken away all these things from me and telling me, ‘I can't do this and I can't do that' and she'll do it for me. (Marie)

Surveillance-type behaviour causes great stress:

… she won’t leave me alone to sort things up the way I want to do it … I think she’s being too protective … you feel, everything I’m doing now is wrong. There’s no intention in being that way but … (Anthony)

Recognition of good intentions and a sense of grievance about perceived unwarranted restrictions leads to a range of emotional and practical responses. These include altering personal behaviour to comply with relatives’ expectations, despite what participants feel capable of themselves:

Ian: You’ve actually got to turn yourself into a victim to keep them happy.

Robert: At the same time, that brings you down, you demoralise yourself.

Ian: That brings more stress, but they can’t see that.

Robert: That brings more stress, but at the same time, with good intentions …

The expressed need to ‘turn yourself into a victim’ may serve several needs within these altered relationships but would seem at considerable cost to the self-esteem and recovery potential of the person with dementia. Requests from relatives are sometimes resisted and may involve covert behaviour to thwart attempts to curb, monitor or control:

I’ve done that, I’ve done that! (switched phone off) and the next thing you know … “What did you switch your phone off for?” (Robert)

… they actually perceive you as more crippled than what you are. (Ian)

These excerpts suggest a diminishing of participants’ status, at least in their own perception, by their relative’s concept of them as less able than they believe themselves to be.

Some express concern around stress they feel they have caused their relatives but others perceive themselves as making considerable effort to avoid this. Part of this effort lies in holding back feelings:

… so, if I’m having problems myself with my dementia, there’s no way I would discuss it with my family … they have enough worries …(Brenda)

There are many references to recognising stress in family members and the negative impact this has in turn on their own level of stress:

And then they get upset because you get upset with them, you know, and that just adds on to the stress cycle, you know. (Ian)

This ‘cycle of stress’ does not always relate to conflict but sometimes emanates from reciprocal concern:

She (sister) said, “Look I'm alright” but she's not … I said, “This is too much for you” and she said, “No it's not - as long as you are alright.” (Paula)

Theme 3: It’s the stress of living with dementia

This theme reflects stress experienced in living day to day with the symptoms of dementia, sometimes poorly explained, often unpredictable and changeable. The uncertainty about what is being experienced is stressful as is searching for answers. Stress is described as arising from a lack of understanding that certain symptoms would be experienced in dementia, for example, visuo-perceptual changes and excessive tiredness. Stress is relayed as a prominent feature, unexplored or even alluded to, by health professionals:

Nobody … has never been brought up that this is part of the dementia … it’s a stress of living with dementia … not knowing is worse than knowing – keeping it from us is, I think, a sin beyond anything … (Arlene)

When symptoms experienced don’t match participant understanding of dementia, there may even be concern that a mistake has been made:

I kept thinking I’m sure it's not dementia because dementia’s forgetfulness … (Arlene)

The stressful nature of symptoms lie in part in their inconsistency and unpredictably, profoundly impacting on confidence:

… even if I was making a meal - things (voice breaking) that I had done for years - all of a sudden couldn't remember … (Paula)

Ian offered a description of such experiences which was readily recognised by other participants:

We all experience it. It’s like shutters going down. (Ian)

Living with the features of dementia may bring associated risks of harm and the stresses associated with living with these risks are acknowledged:

Last year I nearly burned the house down because I had put the wrong ring on the cooker … Talk about stress! (Ian)

For others, potential risks are associated with the psychological impact of failure:

I stood outside the door and I said, am I going to go in here and make an absolute jackass of myself – that’s what I was asking myself. (Anthony)

Some participants demonstrate considerable perseverance in trying to maintain activities when clearly a struggle. Ian expresses the importance of such persistence to his self-esteem:

… it’s my challenge, this is the way we work today … that’s my way, my coping mechanism, to say, I haven’t lost everything … (Ian)

Theme 4: A whole new set of rules

This reflects stress experienced in having to function differently within a changed personal landscape. Exchanges reveal participants to be in different places in respect of these ‘new rules’ – some still fighting and others beginning to see the changes, initially so frightening, as ‘normal’. Stress is described in association with the effort involved in this transition.

A number of examples from participants point to multiple threats to self-esteem and confidence and indicate the need to approach activities differently, or discontinue them due to their stress potential. Changes can also bring a perception of being unable to fulfil previous roles in the life of others:

Do you know what it is, I can't help (my sister), that's what it is, that's stress. (Paula)

Self-questioning and frustration recurs frequently in discussions:

… I'm not, I'm still, I still get wee bits of hard, (looks tense, clenches fists) nervy things - you know, (gestures - fists clenched and shaking) Come on, what's the name? You know, that sort of stuff - you! (addressing himself). (Fred)

For their illustrative quality on different perspectives over time, the exchanges between Sandra, very recently diagnosed with Alzheimer’s disease, and others who received their diagnosis three or four years previously, are especially interesting:

Sandra: … I feel I’m not within this because other people can do better than me (all others, ‘No, no, no') … Also, it's, I don’t, I feel that I’m not, I get very stressed because I can’t cope with things that other people I know can keep (pause) continuing to do and, em, it's eh, the stress that I get, in all sorts of situations. I mean just the kind of things you were talking about – I didn’t know what my problem was … these things are things that I’m learning …

Arlene: It’s like looking in a mirror when I see Sandra … I thought, they (the others in the group) had a secret that nobody was telling me … how come they’re so ‘in control’ and I’m so ‘out of control' … I was just in a state of terror all the time …

The others in the group explain to Sandra that the levels of stress and communication difficulties she is presently experiencing are no different to that experienced by themselves previously, especially following diagnosis. It is evident from further exchanges that stress remains but for those diagnosed some time ago, strategies have been developed to keep it in check to some extent. Fred reflects on how bad things were initially but listening to others and learning he is regaining a sense of control, whilst still appreciating he is not going to get back to where he was pre-diagnosis:

… for the first month you can’t cope with it all - you’re just not there - well, you don’t want to be there - (put hands up like ‘stop’) but … I’ve listened to the people I’ve been dealing with - I’m happier that I think I can go a wee bit further … (Fred)

A further dimension is how the ‘unfamiliar’ that brings stress can become ‘familiar’ and correspondingly less stressful. Here, Ian addresses Sandra’s concerns that others seem to be coping better than she is:

You get this indecision – like we say … it will frustrate you now, whereas I would see it as normal, Arlene would see it as normal, Robert would see it as normal. (Ian)

Ian’s attempts to provide reassurance to Sandra are not on the basis that the features she is experiencing will go away or even lessen but he offers her hope that she will (as others have done) become familiar with them and begin to see them as ‘normal’. Threads running through the conversation relate to the potential of learning to cope with change and also learning from each other. There is a sense of moving from being incapacitated by an overwhelming sense of loss to one of action and learning. Experiences described fluctuate and reactions change over time. Stress may become less incapacitating as experiences of symptoms, new ways of looking at the world, become more familiar and coping strategies are developed.

Theme 5: It’s our lives and we are going to get it under control ourselves

This theme communicates a strong sense of autonomy and reflects perceptions that an important aspect of coping with stress lies in self-determination. There are many references to taking personal responsibility and finding the inner strength to deal with stress experienced, albeit this does not come easy:

You’re the one that’s got to accept it, get the bull by the horns and then find a way out of it. (Robert)

Many participants demonstrate belief in themselves, their will and capacity to positively influence and take control of their lives:

… I think, eh, if I can stay at this level then I can make myself work a wee bit harder for the one or two things I'm not good at … (Fred)

‘Learning about oneself’ is an interesting phrase used by several participants referring to what one is still capable of despite having dementia. The ability to cope with stressors by changing personal behaviour patterns is often of a very practical nature, for example, organising the day around periods of excessive tiredness:

I find, quite frankly, that I get out of bed in the morning, I feel great – but as the day goes on I get more crabbit (irritable) – I just feel I don’t have the same grip … I’m not so responsive … as the day goes on … (Anthony)

Ian, who expressed feelings of profound loss within the study’s earlier theme (‘… that guy is gone …’), communicates continuity here in relation to his sense of self:

… how I coped with my life is the past is also how I coping with it now because I’m still same person – I haven’t become somebody different or somebody new – I’ve just got an extra problem to deal with. (Ian)

This is not contradictory if read within the context of individuals as complex, multi-faceted beings, capable of many ‘selves’. Loss of certain aspects does not change the fundamentals of personhood.

What is clear from the exchanges is that those participants who have experienced a longer period since their diagnosis express some degree of emotional adjustment. Taking greater control does not necessarily mean excluding others and the help of others is frequently referred to. One phrase used, ‘Something strengthening, other people can help’, provides an important context to the kind of help that is perceived as meaningful. Assistance which is directed, negotiated or worked out in partnership with participants is especially welcome. Many refer to the specific strength and value attached to support from friends. It is clear that where sustained, friendships offer a great deal towards the quality of participants’ lives and their emotional support:

… there are friends who are good for practical help and there’s friends you would go to if you need help emotionally … (Arlene)

It is evident that for many, new friendships have grown out of the contact with other people with dementia. Aspects of support come from these new friendships, formed quite specifically through a shared understanding of experiences. There are many references to the ‘connection’ felt when meeting other people with dementia – how this enhances mood:

It’s great that we can talk about something so important and laugh at the same. (Anthony)

Although the sense of shared experience appears important, it does not detract from the need to find individual strategies to cope:

… the strategies you develop have to be your strategies, but the only way to arrive at them is through time and experience … there isn’t an easy option … You are just as stressed out as you were before – it’s just that your way of getting through the day is a bit different. (Ian)

There is a sense of self-discovery too – ‘What am I capable of? and ‘What works for me? – in other words, personal growth and a desire for self-management or assistance on their own terms.

Discussion

This study supports the body of work on subjective experiences pointing to the ability of people with dementia to share insights into their needs and experiences (Bender & Cheston, 1997; Clare, 2003; Clare & Shakespeare 2004; Downs, 1997; Harman & Clare, 2006; O’Conner et al., 2007; Wilkinson, 2002) and awareness of changes over time (Clare, Roth, & Pratt, 2005). Participants could share their experience of stress, perceptions of stressors and coping strategies developed. Continuity in how participants dealt with stress in earlier life and that associated with dementia highlights the importance of person-centred support (Kitwood, 1997; Kitwood & Bredin, 1992). Individual personality traits and established coping styles persist and sustain influence, concurring with Lazarus and Folkman’s (1984) representations of stress and coping.

Variety in coping styles suggests a more complex relationship between coping style and cognitive status than previously suggested (de Souza-Talarico, Chaves, Lupien, Nitrini, & Caramelli, 2010). Indications have been that people with Alzheimer’s disease demonstrate a preference for ‘emotion focused’ rather than ‘problem solving’ approaches (de Souza-Talarico et al., 2010). As suggested by Ostwald et al. (2002), coping styles illustrated here are broadly based and not fixed, concurring with the view that coping in dementia may occur along a continuum from ‘self-maintaining’ to ‘self-adjusting’; influenced by previous experiences, personality and resources (Clare, 2002, 2003; Pearce, Clare, & Pistrang, 2002). Recurring themes of ‘trying harder’ and regaining ‘control’ have clear resonance with the work of Clare (2002) on ‘awareness’ in early Alzheimer’s disease.

Loss of friends and changing relationships reflect social disconnection reported as common experiences in dementia (Alzheimer’s Society, 2013). Associated feelings of loneliness and distress chime with those described by other groups experiencing life-altering and life-limiting illness (McGrath, 2003). The complex but nonetheless normal grief responses of individuals following a diagnosis may be misinterpreted as symptoms of the underlying neurological condition, an issue recognised in other forms of mental illness (Perkins, 2006). In common with other explorations of lived experience in dementia (De Boer et al., 2007; van der Roest et al., 2007), loss remains a feature over time but adjustment is evident. Losses relate closely to challenges of self-perception arising from perceived changes in oneself, heightened by the altered responses of others. Over-protectiveness, stigma and estrangement are especially difficult, reinforcing perceptions of feared disability and loss of competency.

Family relationships emerge as both a source of stress and support. Tensions described support a focus on the everyday lives of people with dementia, where current experience may conflict with long-standing relationship interactions and reciprocity (Clare & Shakespeare, 2004; Murray, Schneider, Banerjee, & Mann, 1999; Purves, 2011). The willingness of others to co-operate in the construction of a ‘self’ presented by the person is important; and perhaps especially so in relation to the threat potential of dementia to selfhood and well-being (Clare, 2003; Kitwood, 1997; Sabat & Harré, 1992).

As described by Clare et al. (2005), participants sense their independence potential to be undermined by ‘over helpful’ partners. Work in this area is limited but support exists for participants’ sense of being monitored excessively by relatives (Askham, Briggs, Norman, & Redfern, 2007). Justifications for such surveillance include preventing stress and harm befalling the person with dementia (Askham et al., 2007). Indications here are that such monitoring (even if of benign intent) may cause considerable distress and undermine potential. Participants’ descriptions of relatives’ behaviour echo aspects of Kitwood’s (1990) malignant social psychology, specifically the impact on self-esteem through ‘disempowerment’.

Perceived over-protective behaviour frequently relates to safety concerns. Perceptions regarding risks may be influenced by wider cultural concepts of mental illness, such as stereotypical associations with incompetence and dangerous behaviour (Link & Phelan, 2001; Link, Yang, Phelan, & Collins, 2004). The harm potential of disempowering or de-skilling individuals who are denied the opportunity to take risks is an important consideration in weighting risk outcomes (Carson & Bain, 2008; Clarke & Members of the International Collaborative Research Network on Risk and Ageing Populations, 2006; Clarke, Wilkinson, Keady, & Gibb, 2011). As described by Clarke et al. (2010), carers may amplify risk perceptions and tensions around control take place regarding role identity and relationships.

Over-protective behaviour may accentuate the sense of loss experienced by the person with dementia, reinforcing negative views and concerns of what life will be like following diagnosis.

If resultant resistive or covert behaviour described by participants reflects attempts to protect their sense of identity and self-worth, attempts to curtail such behaviour may pose a further threat. Self-esteem is described as having a complex association with subjective happiness and objective performance, and an important causative and consequential factor in experiencing success, failure and ability to mitigate effects of stress (Baumeister, Campbell, & Vohs, 2003). Any negative impact on self-esteem may hinder potential for coping, adjustment or recovery from the impact of stressors (DeLongis, Folkman, & Lazarus, 1988). Clare (2003) indicates losses experienced in control and competence may affect self-confidence in a way likely to undermine abilities (and attempts) to do things managed previously.

The person with dementia who is experiencing grief may express this in ways which families perceive as features directly, and solely, a result of their relative’s condition. Indeed, the features presented to them may correspond with pre-conceived, societal expectations of dementia. Both person with dementia and family members may experience an anticipatory type of bereavement as they register the future changes dementia will bring and grief responses to the multiple losses confronting them in their daily lives and relationship (Doka, 2004). If the responses of others further impact negatively on the self-esteem of the person with dementia (Clare, 2003), there is a risk that optimal opportunities for recovery from grief may be undermined – see Figure 1.

Figure 1.

Stress – Hope model of grief in dementia.

When support is viewed as inappropriate, it may accentuate rather than moderate stress effects (Cohen & McKay, 1984), especially if associated with a perceived loss of freedom, indebtedness or inadequacy (Gross, Wallston, & Piliavin, 1979). It is suggested that support perceived as unhelpful may link to early life experiences of attachment, subsequent perceptions of access to helpful support and ability to cope with adult stress (Shaw, Krause, Chatters, Connell, & Ingersoll-Dayton, 2004; Uchino, 2009). Findings indicate the importance of how a person with dementia views support provided by their immediate network (and perhaps wider). This aligns with the theory that supportive aspects of relationships (in their ability to mitigate stress) are only realised when support provided matches coping requirements elicited by the specific stressors or stress experiences (Cohen & McKay, 1984).

Whilst a considerable body of work exists on the impact of behaviour in people with dementia upon carer stress; this study reinforces the importance of family behaviour upon stress experienced by the person with dementia. Ablitt, Jones, and Muers (2010) suggest people with dementia may be distressed by psychological difficulties experienced by family members and participants in this study clearly indicate awareness of the impact on their own experiences.

The Progressively Lowered Stress Threshold model (Hall & Buckwalter, 1987) has largely focused on how others can adapt their approach or the environment to minimise stress experienced by individuals with dementia. This study supports those aspects of Progressively Lowered Stress Threshold model which acknowledge people with dementia experience stress, also the influence of other people and environment. This study highlights potential capacities in the person with dementia to exert control over their own stress, over time and with helpful support. Exploring ways to help persons with dementia help themselves and optimise control over stressors may be significant to both well-being and capacity to adapt. Participants who describe greater stress in the past than currently –through a cognitive shift in thinking, accepting certain difficulties as ‘the norm’ and/or developing coping strategies – present a possible alternative to notions of linearly progressive lowered threshold to stress. Over time, participants perceive stressors differently and less threateningly, as experiences become more familiar and strategies for coping developed. Such strategies may be supported by access to others who relate to the person’s experience. This includes other people with dementia and others who can offer (in the words of participants) ‘Something strengthening …’. The exchanges between Sandra (recently diagnosed) and other participants makes explicit the importance of personalised approaches in post diagnostic support, taking account of individual situations, responses and pre-existing knowledge. Sharing information and addressing difficult conversations in a meaningful way is likely to be enhanced by relationship continuity and trust.

Conclusion

Attention to the experiences of stress described by participants in this study may support the potential for positive adaptation in dementia. Such support involves:

Acknowledging high levels of stress may be experienced. Understanding multiple losses give rise to grief for ‘the person that was’ and anticipated grief over an altered future.

Seeking to ensure people with dementia stay as connected as possible to whoever and whatever matters most to them.

Supporting relationships to maintain reciprocity, shared understanding of stressors, grief processes, recovery potential and risk enablement.

Appreciating the unique experience of dementia, providing person-focused support in understanding/managing symptoms, optimising self-management.

Considering new connections which may offer strengthening support, such as a peer group whilst appreciating groups will not be right for everyone.

Introducing ways of finding personal, situation-specific solutions and coping strategies to address the challenges of living to a ‘a whole new set of rules’, with a focus on locating (or relocating) control with person with dementia.

Giving people time – and hope. A sense of purposefulness and meaning is not only important to well-being in a general sense but may be relevant to an individual’s capacity to adapt to challenges and changes.

The participants’ perception that their stress can be reduced, and their functional ability optimised through enhanced control over their own lives, carries a key message for all practitioners and points towards a focus not only on how support is received but also perceived.

Footnotes

Declaration of Conflicting Interests

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

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Barbara K Sharp, PhD, BA (Hons) Lit, PG Cert. Research Methods; RN (Adult), RN (Children), Nurse Lecturer/Practice Educator; Policy and Research Advisor, Alzheimer Scotland; Alzheimer Scotland Centre for Policy and Practice, University of West of Scotland. Barbara Sharp has a background of nursing within the NHS and has worked for Alzheimer Scotland for the past 27 years in operational management, practice development and research. Currently she works within the Policy and Research Team of Alzheimer Scotland and the Alzheimer Scotland Centre for Policy and Practice, University of West of Scotland. Barbara is a member of the National Dementia Champions training team and works closely with Alzheimer Scotland Dementia Nurse Consultants operating in all Scottish Health Boards. She works in collaboration with NHS Education for Scotland to deliver a range of strategically aligned educational programmes in dementia care. Barbara completed her PhD entitled Stress as Experienced by People With Dementia: An Interpretative Phenomenological Analysis in 2015. Her research interests are stress and dementia, well-being in dementia, advanced dementia, palliative and end-of-life care in dementia.

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