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Improving the experience of dementia and enhancing active life -living well with dementia: study protocol for the IDEAL study

Improving the experience of dementia and enhancing active life -living well with dementia: study protocol for the IDEAL study
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  STUDY PROTOCOL Open Access Improving the experience of dementia andenhancing active life - living well with dementia:study protocol for the IDEAL study Linda Clare 1* , Sharon M Nelis 1 , Catherine Quinn 1 , Anthony Martyr 1 , Catherine Henderson 2 , John V Hindle 3 ,Ian R Jones 4 , Roy W Jones 5 , Martin Knapp 6 , Michael D Kopelman 7 , Robin G Morris 8 , James A Pickett 9 ,Jennifer M Rusted 10 , Nada M Savitch 11 , Jeanette M Thom 12 and Christina R Victor 13 Abstract Background:  Enabling people with dementia and carers to  ‘ live well ’  with the condition is a key United Kingdompolicy objective. The aim of this project is to identify what helps people to live well or makes it difficult to live wellin the context of having dementia or caring for a person with dementia, and to understand what  ‘ living well ’ means from the perspective of people with dementia and carers. Methods/Design:  Over a two-year period, 1500 people with early-stage dementia throughout Great Britain will berecruited to the study, together with a carer wherever possible. All the participants will be visited at home initiallyand again 12 months and 24 months later. This will provide information about the way in which well-being, lifesatisfaction and quality of life are affected by social capitals, assets and resources, the challenges posed by dementia,and the ways in which people adjust to and cope with these challenges. A smaller group will be interviewed in moredepth. Discussion:  The findings will lead to recommendations about what can be done by individuals, communities, healthand social care practitioners, care providers and policy-makers to improve the likelihood of living well with dementia. Keywords:  Quality of life, Life satisfaction, Well-being, Person with dementia, Carer, Alzheimer ’ s disease, Vasculardementia, Fronto-temporal dementia, Parkinson ’ s disease dementia, Lewy body dementia Background Measuring and improving general well-being across thepopulation, rather than focusing exclusively on measuresof economic performance, is central to the UK Govern-ment ’ s development of social and health policy. Withinthis broad policy trajectory, enabling people with de-mentia and their primary (usually family) carers to livewell with dementia is seen as a priority [1]. The UK Na-tional Dementia Strategy [1] focuses on improving publicand professional attitudes and understanding, providingearly diagnosis and intervention, and ensuring high-quality care and support through all stages of dementia [2]. Gainsin public understanding and effective service provisionrequire a clear articulation of what it really means to  ‘ livewell ’  in the context of the challenges dementia brings forindividuals, relationships and communities, and a clearand current understanding of the factors that influence theability to live well with dementia [3].In the limited instances where the concept of   ‘ livingwell ’  has been discussed explicitly in the literature relat-ing to dementia, it is equated with experiencing a goodquality of life (QoL) [4]. Perceived QoL and quality of care can be regarded as providing important indices of whether a person with dementia or carer is living wellwith the condition, but they do not capture all the ele-ments involved. Living well with chronic illness and dis-ability has been defined as  ‘ the best achievable state of health that encompasses all dimensions of physical,mental and social well-being ’  [5]. This definition empha-sises the pivotal role of social factors in determining the * Correspondence:  1 Research in Ageing and Cognitive Health, School of Psychology, BangorUniversity, Bangor, UK Full list of author information is available at the end of the article © 2014 Clare et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the CreativeCommons Attribution License (, which permits unrestricted use, distribution, andreproduction in any medium, provided the srcinal work is properly credited. The Creative Commons Public DomainDedication waiver ( ) applies to the data made available in this article,unless otherwise stated. Clare  et al. Health and Quality of Life Outcomes  2014,  12 :164  ability to live well, noting that  ‘ living well is shaped by the physical, social and cultural surroundings, and by the effects of chronic illness not only on the affected in-dividual but also on family members, friends and carers ’ .It also acknowledges the centrality of subjective percep-tions and appraisals:  ‘ for each individual with chronic ill-ness, to live well takes on a unique and equally important personal meaning, which is defined by a self-perceived level of comfort, function and contentmentwith life ’ . Older people in general similarly hold multi-faceted and individual views about what it means to livewell in later life [6]. Living well in this definition is abroader construct than QoL, incorporating concepts of well-being and life satisfaction, and reflecting the im-portance of social capital, assets and resources and thepotential for social participation.Enabling people to live well with chronic illness or dis-ability may reduce the costs to society as well as benefit-ting individuals, families and communities. In the case of progressive neurodegenerative conditions, enabling peopleto live well presents particular challenges as needs changeover time. In relation to dementia, it has been noted that ashift in perspective from a primarily medical or disease-oriented focus to a more socially-oriented understanding[7] is needed to take account of aspects that have hithertobeen largely neglected in research with people with de-mentia, such as differences in social capital, social re-sources and social circumstances [8]. The Improving theexperience of Dementia and Enhancing Active Life(IDEAL) project will examine how social and psychologicalfactors influence the possibility of living well with demen-tia, will identify what changes could be made at individualand community levels, and will result in recommendationsfor social and health care purchasers, providers and plan-ners, and advice and guidance for people with dementiaand those who support or advocate for them. Theoretical framework  Our investigation will be conducted in relation to amodel that identifies the following key elements:  capi-tals, assets and resources, challenges, adaptation,  andability to  live well  . This model acknowledges the central-ity of subjective evaluations in determining whether aperson is  ‘ living well ’  [9].  Capitals, assets and resources crucially shape the pathway through the experience of dementia, whether directly affecting symptoms and pro-gression for the people with dementia, or affecting thepotential for adaptation for the people with dementiaand carers, or both. They can influence the effects of pathology, mitigate the extent of any resulting disability,prevent excess disability and reduce the risk of social ex-clusion [10]. They include social (e.g. social networks,social contacts, interpersonal relationships, availability of help and support), environmental (e.g. neighbourhood),financial (e.g. income), physical (e.g. physical functionand fitness), and psychological (e.g. self-esteem, opti-mism) aspects, as well as access to social and healthcare. The operation of these capitals, assets and re-sources can be affected by the presence and severity of dementia-related and other  challenges  and by the degreeof   adaptation  achieved.  Adaptation  is the potential tobe able to adapt and to manage and cope with the  chal-lenges  dementia brings, including the symptoms them-selves and their impact and implications, as well as any other challenges encountered (e.g. dependence, otherhealth problems, frailty, sensory impairments, depres-sion, carer stress). It is central to the possibility of livingwell and maintaining QoL [11-13], as indicated by models of   ‘ successful ’  ageing in the face of physical illness, frailty or disability [11]. Adaptation encompasses both practicaland social changes, such as modifying activities, modifyingthe environment, or mobilising additional support [11],and psychological changes, such as altering expectationsand revising goals [12]. The outcomes of the complexinteractions between  capitals, assets and resources , challenges  and  adaptation  are reflected in the socialparticipation, expression of positive emotions, and subject-ive evaluations of well-being, life satisfaction, and QoL,that together index the extent to which the person is  living well   with dementia. This model is summarised, in simpli-fied form, in Figure 1. What do we know about indicators of living well withdementia? The experience of living well is indexed by positive eval-uations of subjective well-being, life satisfaction andQoL. These indices are inter-related but encompass dis-tinct elements. Subjective well-being reflects the emo-tional response to a situation, including the experienceof an appropriate balance of positive and negative emo-tions [14]. Life satisfaction comprises positive elementsof happiness, well-being, a sense of meaning and pur-pose in life, ability for continued personal growth, asense of being in control of one ’ s life, and active socialparticipation [8]. Quality of life is defined by the WorldHealth Organisation as  ‘ an individual ’ s perceptions of their position in life in the context of the culture and values systems in which they live and in relation to theirgoals, expectations, standards and concerns. It is a broadranging concept, affected in a complex way by a person ’ sphysical health, psychological state, personal beliefs, so-cial relationships and their relationship to their environ-ment ’  [15]. Quality of life has been conceptualised eitheras a generic construct or in terms of aspects related to aspecific domain, such as health (Health-Related QoL,HRQoL). While HRQoL should focus specifically on fac-tors affected by the condition [16], given the pervasive ef-fects of dementia, there is in practice often considerable Clare  et al. Health and Quality of Life Outcomes  2014,  12 :164 Page 2 of 15  overlap with more generic conceptualisations. For each of these key indices of living well, there are consistent andwell-established relationships with the capitals, assets andresources identified in our theoretical model for olderpeople in general. Here we propose to interrogate, for thefirst time, the relationships between these key determi-nants of living well from the perspective of people withdementia. We will integrate data on physical and psy-chological health, disposition, personal beliefs, socialrelationships and environmental factors to provide acomprehensive model of the relative impact of eachelement and the trajectory of change as the diseaseprogresses.Subjective well-being is important for health, and in-fluences health trajectories, although this is more clearly established for physical than for mental health [14]. Arecent review emphasises the degree to which socio-economic status, income inequality and cultural differ-ences, along with personality and emotional style, are re-lated to individual variability in well-being, and bothgiving and receiving social support to others havepowerful effects on well-being and health [17]. Socialengagement and social support are key aspects of well-being in later life [18] and social participation is associ-ated with better subjective health [19]. Perceived socialsupport and participation in activities are significantly associated with well-being in cognitively-impaired resi-dents [20], while loneliness has a negative impact onwell-being in older people [21]. Feelings of loneliness arepredictive of developing dementia [22,23]. Loneliness is a significant issue for people with dementia because de- veloping dementia often results in a loss of relationshipsand social contacts and a reduction in social networksand social engagement [24]. Life satisfaction is lower inthose with depressed mood, but higher in those withgood social networks and social support, economic secur-ity, a strong sense of personal control, and good subjectivehealth [25]. Socio-economic status [26], personality traits [27] and educational level [28] are important correlates or predictors of life satisfaction in older people without de-mentia. One study of life satisfaction in people with mildto moderate dementia found that social support plays animportant role [29]. Recognising the importance of socialnetworks and relationships, there is a need to examine thenature of social contact, engagement and participation forpeople with dementia, and the implications for well-beingacross the illness trajectory, to help identify strategies thatwill encourage communities to include and better supportpeople with dementia.It has been argued that little is known about the QoLor HRQoL of people living with dementia [30-32]. Qual- ity of life in dementia has been studied in relation to arelatively limited set of factors [8], and numerous studiesdemonstrate that a large proportion of the variance inQoL scores, whether self-rated by people with dementiaor proxy-rated by carers, remains unexplained by commonly-measured patient and carer factors includ-ing symptoms, co-morbidity, carer burden, and basicdemographic variables [33,34]. Depressed mood is a common predictor of poor QoL scores, but cognitivefunction, behavioural symptoms and functional ability show no clear associations with QoL [30,33,35]. Even the inclusion of additional factors such as difficulties inthe caregiving relationship only accounted for 38% of the variance in QoL scores [36], while including thepsychological variables of self-concept, self-reported de-pression and quality of relationship accounted for 52%of the variance in self-rated QoL-AD scores in theMemory Impairment and Dementia Awareness Study (MIDAS) [35]. There is a need to take a broader per-spective if we are to understand variations in QoLamong people with dementia [37]. Individual appraisalsof QoL are influenced by social processes (e.g. social com-parison) alongside psychological factors (e.g. optimism)[38], and adaptation of expectations in response tochanging circumstances and experiences may allow for Figure 1  Overview of factors thought to affect the ability to live well with dementia that will be examined in IDEAL. Clare  et al. Health and Quality of Life Outcomes  2014,  12 :164 Page 3 of 15  QoL to be maintained despite objective deterioration incircumstances or decline in aspects of functioning [13].The relevance of social, environmental and cultural fac-tors is strongly emphasised in qualitative accounts outlin-ing the domains which people with dementia themselvesconsider important in relation to QoL, but these factorshave rarely been included within large-scale quantitativestudies. The domains described by people with dementiahave been characterised as primarily social in nature [39]and include social interaction, social connectedness, socialrelationships, and meaningful social activities alongside fi-nancial security, psychological well-being, autonomy, andhealth [24,38,40,41]. A recent review of domains relevant to QoL in dementia highlighted the importance of socialand psychological factors, including autonomy, choice,control and dignity, alongside environmental, economicand cultural elements [42]. Spiritual well-being has alsobeen cited as a key QoL domain [43]. Social inequalitiesand the resulting health disparities are likely to impactnegatively on QoL [7], while people with more developedsocial networks report better QoL [44]. There is consider-able evidence that strong social networks and socialengagement contribute to maintaining cognitive health(mental fitness) in later life [45], and these factors may alsohave a protective effect for people with established cogni-tive impairment or dementia [46]. Many studies have mea-sured the quantity of social networks and their associationwith cognitive health, but it is the quality of networks thatis likely to be important, as well as their interrelationshipwith levels of social capital and social resources [47]. Few studies are able to provide detailed longitudinal data in thisarea [48]. Social networks may be related to levels of for-mal and informal (unpaid) support and care. Unmet needsare important predictors of self-rated QoL in people withdementia and social networks appear to be related to un-met needs, which affect QoL [44]. Studies that follow theindividual pathways of people with dementia indicate im-portant life events and transitions where the identificationof specialist support may be beneficial [49].While the social environments of people with demen-tia and the social interactions occurring within those en- vironments are important influences on QoL [50], thereis very little research addressing the lived experience of dementia in the context of the physical and social envir-onment or neighbourhood. This is despite evidence thatliving in a neighbourhood with high levels of deprivationis associated with lower cognitive function, even whencontrolling for individual socioeconomic circumstances[51], while neighbourhood resources have the potentialto promote cognitive reserve [52]. A recent qualitativestudy, noting the importance of access to a local, familiar,safe environment for well-being, deftly characterised the ‘ shrinking world ’  of people with dementia in which thearea of physical space which people with dementia find itcomfortable to occupy becomes gradually smaller [53].The lack of neighbourhood accessibility and the absenceof a feeling of safety are indicative of low social capital[54], and confinement within the home has been identifiedas an objective indicator of poor QoL along with the ab-sence of any expression of positive emotions [16]. En- vironmental characteristics and accessibility have majorimplications for the possibility of continued social par-ticipation and hence for the ability to live well with de-mentia. It is timely to examine these hitherto neglectedfactors in dementia research. Focusing on the lived ex-perience of dementia and the daily lives, social relationsand physical and social environments of people with de-mentia and carers would make it possible to identify how mundane social interactions in a range of areas(shopping, travelling, leisure, internet, volunteering, fi-nancial etc.) facilitate or present barriers to living well.In addition to the limitations of research focusing on thedimensions of living well with dementia, the trajectory of living well over the course of dementia and the factors as-sociated with change in the ability to live well remain to beclearly established. Using the example of QoL, the mostextensively-studied element of our concept, evidence onchanges in level of QoL in community-dwelling sampleswith mild to moderate dementia is inconclusive [55-59] as are findings for care home residents [31,32,60], and all studies note considerable individual variation, described inone case as  ‘  vast ’  [58]. Changes in clinical variables are notdirectly associated with increases or reductions in QoLscore [55,56]. Recent findings support the view that social and interpersonal factors may play a stronger role; for ex-ample, a positive relationship with carers plays an import-ant role in maintaining QoL in people with early-stagedementia [59] and a reciprocal relationship between carerfactors, such as carer stress and perceived quality of relationship, and observer-rated people with dementiawell-being six months later has been reported [61,62]. Well-being in the carer may be a crucial influence on QoLfor the person with dementia and such reciprocal influ-ences require consideration. Whilst research has exploredthe influence of characteristics of the person with demen-tia, such as behavioural problems, on carer well-being [63],relatively little attention has been paid to how carer fac-tors, such as burden or feelings of competency, impact onthe well-being of the person with dementia [61], yet re-search exploring predictors of placement in full-time careindicate that carer factors play an important role in thisdecision [64]. It is widely understood that outcomes forcarers of people with dementia are very variable [65], al-though a relatively limited range of carer factors has beenstudied in relation to outcomes. Examining a wider rangeof social and psychological factors in a large sample of carers will clarify how capitals, assets and resources influ-ence their ability to address dementia-related challenges Clare  et al. Health and Quality of Life Outcomes  2014,  12 :164 Page 4 of 15  and adapt to the carers role, and contribute to the possibil-ity of living well for the people with dementia and forthemselves. There is a need to investigate the factorsunderlying changes in QoL and individual variations inQoL trajectories for people with dementia [58,59] to cap- ture the complex interplay of social and psychological vari-ables involved. This conclusion applies equally to the othercomponents of our concept. Our proposed large-scale lon-gitudinal study of the factors and predictors of living wellwith dementia and how this changes over time fulfils thisneed. Why is this study timely? Policy recommendations [3,66] recognise the importance of understanding the personal and social experience of people with dementia and carers. Acknowledgement of the personhood of people with dementia [67] and theimportance of interpersonal relationships [68] hasbrought improvements in care provision, but limitedconsideration has been given to the way in which widersocial issues affect the ability to live well with dementia[69] or to the capitals, assets and resources reflecting theaccumulation of advantages or disadvantages over time[70]. Social participation and social networks are centralto the accumulation of social capital, and greater socialcapital is linked with better access to health care andbetter subjective health at both individual and commu-nity levels [71]. Similarly, little emphasis has been placedon the personal psychological characteristics, shaped by social and cultural norms, which contribute to the ability to adapt to and live well with dementia or to the inter-action between the condition and age-typical changesand transitions. There is a need to examine not just thesubjective experience of dementia, but also its social andenvironmental context. Finally, although it is understoodthat people with dementia [72,73] and carers [74] re- spond in very diverse and individual ways, little is knownabout how people with dementia and carers make senseof and adapt to the condition and to the changes they experience over time, or about the reciprocal influencesbetween each member of the dyad. The dementia trajec-tory encompasses enormous variation from the earlieststages to the end of life, and what constitutes living welldiffers across this trajectory. We will focus on peoplewith dementia who, on entry to the study, are living intheir own homes with mild or moderate dementia, andfollow them over time, observing whether and how theirsituation changes, and monitoring the progression of de-mentia, in order to identify the factors that influencetheir ability to live well as their dementia progresses.Novel elements in this study are the detailed and exten-sive focus on forms of capital, assets and resources, theemphasis on the process of adjustment, and the inclu-sion of multiple indices of   ‘ living well ’ .There are currently no large datasets from cohorts of people with dementia addressing living well with demen-tia, or explaining how social and psychological factorsinfluence the ability to live well, that can inform policy and practice. Internationally, longitudinal studies of age-ing such as the Odense study in Denmark [75] andCache County [76] studies in the USA, have focused onestimating the prevalence and incidence of dementia andidentifying primarily medical and health-related risk fac-tors. The Berlin Ageing Study [77] uniquely adopts abroad interdisciplinary gerontological perspective in itsfocus on the old and very old, but does not have a pri-mary focus on dementia. In the UK, the Cognitive Func-tion and Ageing Studies (CFAS) study has focused onestimating incidence and prevalence of dementia [78]and identifying risk factors, although it does providesome useful longitudinal socio-economic data on peoplewith dementia. CFAS-2 is currently repeating this exer-cise in England and Wales, and while CFAS-Wales in-cludes some consideration of the role of social andpsychological factors in predicting development of de-mentia, this does not directly address the nature of whatit means to live well with dementia. A small number of studies have investigated the longitudinal trajectory of QoL in dementia, but sample sizes have been relatively small and some have focused only on care home resi-dents [31,32,56-60]. The Dependence in AD in England (DADE) study recently provided data on costs and carerburden with regard to living with dementia [79], againwith a relatively small sample. However, there remains adearth of data addressing the complex inter-relationshipbetween forms of capitals, assets and resources at indi- vidual and community levels and the ability to adapt toand live well with dementia. There are no large cohortstudies specifically focused on people with dementia thatcan provide definitive information about these factors.It is now understood that people with dementia at allstages through to moderately severe impairment can re-spond to self-report questionnaires [29,80,81], and many  people with severe dementia can describe their feelingsand experiences and comment on their situation andQoL [38,59,82]. While some studies have suggested that lack of awareness in people with dementia impacts on thereliability of self-ratings of variables such as QoL [83,84], others have not found such an association [59,85,86]. Quality of life is an individual, subjective evaluation of one ’ s own situation, and self-reports should therefore beprioritised wherever possible. The status of proxy ratingsmade by carers is questionable [87,88], as people with de- mentia and carers place different degrees of emphasis on various factors. For people with severe dementia, carer rat-ings may be an important source of information. One so-lution is to obtain both types of rating at earlier stages,making it possible to interpret informant ratings more Clare  et al. Health and Quality of Life Outcomes  2014,  12 :164 Page 5 of 15
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