Aging & Mental Health

Agin

Aging & Mental Health Vol. 14, No. 4, May 2010, 450–460

Remaining hopeful in early-stage dementia: A qualitative study

Emma L. Wolverson (Radbourne)a*, Christopher Clarkeb and Esme Moniz-Cookc

aHull Memory Clinic, Coltman Street Day Hospital, Coltman Street, Hull HU3 2SG, UK; bDepartment of Clinical Psychology, University of Hull, Hull, UK; cOld Age Clinical Psychology,

Institute of Rehabilitation, University of Hull, Hull, UK

(Received 18 July 2009; final version received 26 October 2009)

Objectives: Improving the quality of life for people living with dementia is widely accepted as an important outcome in dementia care services. Positive psychology, the systematic study of strengths, capacities, and personal resources, is one framework for understanding how a person with dementia might achieve this. This study investigated the subjective experience of hope – a construct from the discipline of positive psychology in older people with early-stage dementia. Method: Ten volunteer participants over the age of 65 years were recruited from a memory clinic in England. Semi-structured interviews were used to explore participants’ hopes, in terms of their personal meaning, their resources, and the potential barriers and facilitators of hope in dementia. Interviews were analyzed using interpretative phenomenological analysis (IPA). Results: Eight themes were extracted, subsumed under two higher-order themes: ‘live in hope or die in despair’ and ‘keep living and keep living well’. Participants described how their internalized hope-fostering beliefs that were often learned during childhood were challenged by the reality of hope-hindering experiences associated with old age and dementia. A balancing process of re-appraisal enhanced resolution and this sense of stability then allowed them to develop positive attitudes towards common age-related constraints in their health and social circumstances. Conclusion: The findings offer insight into the existence, nature, and relevance of hope in the lives of people with early-stage dementia. They provide a useful framework for developing hope-fostering strategies in early interventions that aim to assist individuals with dementia to maintain their quality of life.

Keywords: hope; dementia; psychosocial interventions; quality of life

Introduction

Improving the quality of life for people living with dementia is widely accepted as an important outcome in dementia care services – see, for example, the National Dementia Strategy ‘Living well with Dementia’ in England (Department of Health, 2009) and the French Dementia Plan (Portail du Gouvernement Français, 2008). Increasingly, such policies encourage practitioners to use the concept of rehabilitation to develop psychosocial interventions (Moniz-Cook, 2008) that enable people with dementia to maintain a full and meaningful life. Rehabilitation refers to support that enables the person to achieve an optimal level of physical, psychological, and social functioning (World Health Organization, 1998), despite the limitations imposed by dementia (Mountain & Moniz-Cook, 2007). Key to the imple- mentation of this construct in dementia care is an understanding of what might help a person to maintain a good quality of life, notwithstanding the real challenges associated with dementia.

There is a limited but growing body of literature on the positive experiences of people living with dementia (e.g., Bryden, 2005; Cahill et al., 2004; Katsuno, 2005). A recent review of living positively with dementia

(Radbourne, Clarke, & Moniz-Cook, 2008) noted a

range of human strengths, capacities, and resources in

the subjective accounts of people with dementia. The

reviewed studies suggested that the construct of hope

was noteworthy of systematic enquiry (e.g., Clare,

2002; Friedell, 2002; Fukushima, Nagahata, Ishibashi,

Takahashi, & Moriyama, 2004; Snyder, 2001, 2003).

While the study of hope is not new (Lynch, 1965), there

is no consensus on its definition across the life course

(Cutcliffe & Grant, 2001). We examined the social

science literature on hope, including ‘hope in older

people’ and ‘hope in chronic illness’, from 1969

onwards, using PsychINFO and CINAHL databases

and found 18 definitions (Wolverson (Radbourne),

Clarke, & Moniz-Cook, 2009) and 13 different

standardize-related measures. The variation in how

hope has been defined and measured, suggests that it is

likely to be a multi-dimensional construct. An exam-

ination of the extracted literature on the definition of

hope (Table 1) suggests that there are at least seven key

aspects to the construct. Hopefulness in chronic illness is associated with the

improved quality of life through improved tolerance to

pain (Snyder, 2002), better use of illness-related infor-

mation, including adherence to medical regimes

*Corresponding author. Email: [email protected]

ISSN 1360–7863 print/ISSN 1364–6915 online

� 2010 Taylor & Francis DOI: 10.1080/13607860903483110

http://www.informaworld.com

(Moon, Snyder, & Rapoff, 2001), and improved coping and problem-solving (Snyder, Feldman, Taylor, Schroeder, & Adams, 2000). People with greater levels of hope appear to be more able to find benefits and meaning within their illness experience (Linley & Joseph, 2004) and hope has a key role in psychological therapy with older people (Bergin & Walsh, 2005). Studies have noted age-associated physical and psy- chosocial barriers to hope in older people. These include physical illness (Farran, 1985), reduced energy levels, and impaired cognition (Herth, 1993), resulting in cohort differences in definitions of hope. For example, goal achievement, success, and future orien- tation are salient in hope constructs for younger adults, but not older adults (Farran, Sallowy, & Clarke, 1990).

The introduction of acetylcholinesterase inhibitors may, for some, have brought a sense of hope into dementia care services, but the subjective experience of hope in dementia appears to have pre-dated this. For example, Cohen (1991) argued that hope can still exist for people with cognitive impairment and that, even in later stages of illness, people with dementia display qualities of faith and hope as well as the desire to ‘live and love’. Woods (2007) considers the concept of hope in people with dementia in the context of well-being and Duggleby, Williams, Wright, and Bollinger (2009) have recently explored hope in family caregivers. Apart from this, there remains a paucity of literature that offers a way of conceptualizing and applying hope theory to dementia care. This may reflect the wide- spread belief that age and dependency combined with impaired cognition are hope-hindering experiences (Cutcliffe & Grant, 2001; Herth, 1993), particularly in people with dementia themselves.

The aims of this study were to investigate the subjective experience of hope in a small group of older people with dementia (including the facilitators and

obstacles to hopefulness in this context), and to examine how this compares with existing conceptuali- zations of hope outlined in Table 1 as well as the literature on age, dependency, and coping.

As only little is known about hope in older people with dementia, we used an exploratory approach to understand how individuals construe the concept of hope in the light of their knowledge of having a dementia. Given the distinctive nature of dementia and the previously outlined wide-ranging approaches to the definition and measurement of hope, a qualitative methodological approach was adopted. This method focuses on understanding the phenomenology and the subjective meanings that people place on experiences and events in their lives and how these are connected to the social world around them (Miles & Huberman, 1994).

Method

Design

A cross-sectional qualitative design was used where participants’ understandings and experiences of hope were explored through semi-structured interviews. These were designed to elicit the depth and richness within subjective accounts of hopefulness in dementia.

Participants

Participants were recruited from a memory clinic in the north of England between July 2007 and January 2008. Over this six month period, the clinic had 111 ongoing patients of which 22 had not given a priori consent for access to their medical notes for the purposes of research. Eleven participants satisfied the inclusion

Table 1. Themes associated with the construct of hope.

Critical themes of hope Present in definitions by

A positive future orientation: refers to hope as looking forward to a future that is good

Fryback (1991); Mercier, Fawcett, and Clark (1984); Miller (1985); Obayuwana and Carter (1982); Owen (1989); Stanley (1978); Stephenson (1991); Stoner (1982)

A sense of desire: refers to hope as a strong emotional ‘longing’ directed towards something that is valued or important

Averill, Catlin, and Chon (1990); Erickson, Post, and Paige (1975); Gottschalk (1974); Herth (1988); Mercier et al. (1984); Miller (1985); Obayuwana and Carter (1982); Staats (1989); Stanley (1978); Stotland (1969)

Hope ‘for’: refers to hoping for a specific, defined, and measurable outcome or goal

Averill et al. (1990); Dufault and Martocchio (1985); Owen (1989); Erickson et al. (1975); Gottschalk (1974); Herth (1988); Morse and Doberneck (1995); Snyder et al. (1991); Stanley (1978); Stotland (1969)

A generalized hope ‘that . . . ’: refers to a broad sense that life will be worth living in the future

Farran, Herth, and Popovich (1995); Gottschalk (1974); Miller (1985); Obayuwana and Carter (1982); Stanley (1978)

A context of uncertainty: refers to the notion that hope is activated in stressful life-situations.

Fryback (1991); Herth (1988); Miller (1985); Morse and Doberneck (1995); Nowotny (1989); Stanley (1978)

A sense of force or energy: refers to hope as acting as an energising and motivating influence on a person

Averill et al. (1990); Herth (1988); Morse and Doberneck (1995); Owen (1989); Snyder et al. (1991)

Support from others: refers to hope as a interpersonal relational process that occurs between people

Dufault and Martocchio (1985); Miller (1985); Morse and Doberneck (1995); Obayuwana and Carter (1982); Stanley (1978)

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criteria (below), which were accessed from routine data from medical notes collected by memory clinic staff:

(1) Diagnosis of dementia according to DSM-IV criteria, with a CAMCOG (section B of the Cambridge Examination for Mental Disorders of the Elderly. Roth et al., 1986) score �80 (number excluded¼ 3; CAMCOG �80).

(2) Within the mild range of severity on the mini mental state exam (MMSE) (Folstein, Folstein, & McHugh, 1975) with a score of �18, number excluded¼ 6 (MMSE: 17–14).

(3) An awareness of memory difficulties and diag- nosis, as demonstrated to clinicians during their routine clinical work. Clinicians scored patients four or three for awareness based on the Guidelines for Rating Awareness in Dementia (GRAD, Verhey et al., 1995).

(4) At least two months post diagnosis, since this study aimed to explore the experience of hope in living with dementia, rather than the effects of a dementia-diagnosis itself, number excluded¼ 55 (undergoing assessment, or 52 months from diagnosis).

(5) People over the age of 65 years, as age-cohort differences in hope are recognized (Cheavens & Gum, 2000; Wright & Shontz, 1968) and the present study was interested in any interaction between hope and the constructs of old age and dependency, number excluded¼ 4.

(6) Sufficient verbal fluency to take part in an interview, number excluded¼ 2.

(7) Able to give informed consent.

Participants were not included if they had dementia caused by a reversible condition, a history of alcohol dependency, or significant depressed mood as identi- fied by memory clinic clinicians who routinely use a score of �5 on the Cornell Scale for Depression in Dementia (CSDD) (Alexopoulos, Abrams, Young, & Shamoian, 1988) to augment mental state evaluation, number excluded¼ 8.

Clinic staff provided patients meeting the inclusion criteria with verbal and written information about the study during their routine visits. Patients were asked to contact the lead researcher if they were interested in taking part. Ten of the 11 people approached by staff

agreed to take part in the study, one declined to participate due to a recent bereavement.

The total sample of 10 participants comprised three men and seven women, aged 72–87 years (mean age 81.1 years) and MMSE scores ranging from 19–28 (mean MMSE score 23.2). Participants were all Caucasian, reflecting the population served by the clinic and came from a range of socio-economic and occupational backgrounds. They varied in the level of support from the clinic. Some attended a weekly ‘ladies group’ (n¼ 5), others had completed a course of reminiscence therapy (n¼ 2) or weekly in-home psy- chosocial support (n¼ 1) and some simply had an annual clinic review (n¼ 2). Descriptive details are shown in Table 2.

Data collection

Participants who agreed to meet the researcher were contacted to arrange a convenient date, time, and location. Five interviews were conducted in partici- pants’ homes and five at the memory clinic. At the start of the interview process, written consent to take part in the study was sought along with the consent for tape recording and previous consent for access to clinical records was confirmed.

The researcher repeated the GRAD (Verhey et al., 1995) as a semi-structured interview, which included asking a set of open-ended questions from which direct ratings were made on a 4-point scale. Higher scores indicate a high level of awareness. These scores were then compared with clinician-rated scores. No dis- crepancies between clinician and participant ratings were noted, so all 10 participants were included.

The qualitative semi-structured interview schedule, adapted from Herth (1993), used both reflection and the following open-ended questions:

‘I would like you to tell me about your experiences of hope in living with dementia. Can you:

‘Tell me about your hope’ ‘If you could identify a source of hope for yourself what would it be?’ ‘What things/situations cause you to lose hope?’ ‘What kinds of things help you to regain your hope?’

Table 2. Description of participants.

Participant Age Gender Marital Status Diagnostic type Date of diagnosis MMSE CAMCOG GRAD score

1 86 F Widowed Vascular dementia 09/2006 21/30 74/105 4/4 2 83 F Widowed Alzheimer’s Disease 05/2005 20/30 73/105 3/4 3 72 F Widowed Vascular dementia 04/2007 22/30 59/105 3/4 4 80 F Widowed Alzheimer’s Disease 11/2002 19/30 67/105 3/4 5 80 M Divorced Vascular dementia 08/2007 28/30 80/105 4/4 6 87 F Widowed Alzheimer’s Disease 02/2005 25/30 68/105 4/4 7 80 F Single Vascular dementia 06/2006 25/30 80/105 4/4 8 74 M Married Vascular dementia 08/2007 22/30 79/105 4/4 9 87 F Widowed Alzheimer’s Disease 11/2005 23/30 74/105 4/4 10 82 M Married Alzheimer’s Disease 04/2006 27/30 70/105 3/4

452 E.L. Wolverson (Radbourne) et al.

‘What helps you to maintain your hope or makes you feel hopeful?’ ‘What does hope mean to you?’ and ‘How would you define hope?’

Interviews lasted between 30 and 60 min and were audio recorded.

Data analysis

Data from the interviews were transcribed and analyzed using IPA (Smith, Osborn, & Jarman, 1999). This methodology has been successfully used in other qualitative studies of how people cope with dementia (e.g., Clare, 2002). IPA is a method of adopting, as far as is possible, an ‘insider’s perspective’ on the participant’s world (Conrad, 1987), where the researcher attempts to understand subjective experi- ence by assuming a link between what people report and their underlying cognitions. It was therefore particularly suitable for this study on the subjective experience of hope in dementia. IPA also acknowl- edges the dynamic interaction between participant experience and the researchers’ interpretation of this (Smith et al., 1999). Recordings were stored in a locked cabinet and destroyed after transcription.

The analysis involved an iterative process of reading and re-reading each transcript to achieve familiarity, followed by noting key points on tran- scripts, remaining as close to the words of the interviewee and compiling a summary of the key words. Emerging themes identified in each transcript were then examined, re-examined, and grouped under thematic headings until all accounts were covered. These accounts were also examined and re-examined by an IPA group of six researchers, who further reviewed and refined the thematic headings. This cyclical process continued until a final list of themes emerged that reflected all the participants’ transcripts. Each transcript was then coded, so all instances of each theme were identified. One independent researcher familiar with IPA methodology anonymously audited sections of transcripts to ensure that emerging themes

were represented in the verbatim transcripts, to prevent the primary researcher’s (Emma L. Wolverson) own biases influencing the selection of themes. Similarities and differences were resolved through independent checking by a further independent researcher and group discussion was used to reach a consensus of opinion. Then, in order to ensure internal coherence (Yardley, 2000) and participant validation (Smith, 1996), an independent focus group was convened consisting of four volunteers with dementia, who attended a local community centre. They reviewed the analysis to ascertain whether the descriptive account of hope held validity with them (Yardley, 2000). On the basis of this, the list of themes were refined further and agreed by the IPA research group. All the themes appeared in at least one-third of the participants’ accounts and most in two-thirds or more. A final stage of the interpretative process of analysis was conducted to understand how themes related to, or challenged the current conceptualizations of hope. This was based on noting how participant accounts described different processes of balancing the tensions between hope and reality and were influenced by the existing theories of age, coping, and dementia.

Results

Eight themes (Table 3) emerged from the qualitative data, with two higher order themes, ‘live in hope or die in despair’ and ‘keep living and keep living well’. These two themes and their sub-themes suggested that people with early-stage dementia perceive hope as integral to living and an important active ingredient in maintain- ing well-being and quality of life.

The first higher order theme reflects a tension between internalized hope-fostering beliefs and hope- hindering life experiences. Participants seemed to resolve this tension through a process of re-appraisal and acceptance, thus achieving a sense of stability or ‘resolution’. The second higher order theme describes the positive attitudes towards health and social circum- stances in aging that arose from this sense of stability.

Table 3. Themes of hope in early-stage dementia.

Super-ordinate themes Sub-themes Illustrative quotation

‘Live in hope or die in despair’ 1. Legacy of hope ‘My father, he hoped for everything’ 2. Self-activating hope ‘I always carry on’ 3. Personal realism ‘I’m completely dependent on her’ 4. Contextual realism ‘People used to come to me for advice and now

they don’t bother’ 5. Re-appraisal and resolution ‘You always hope for something better, but I

don’t see how it can get better, but I’m quite content as I am now’

‘Keep living and keep living well’ 6. Maintaining health ‘My hope is that I keep well and that my health doesn’t let me down’

7. Maintaining relationships ‘You’ve got to have somebody to talk to haven’t you’

8. Positive coping ‘You live for the day’

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Next we will describe the data supporting the themes outlined in Table 3, using selected quotes to illustrate these.

‘Live in hope or die in despair’

This higher order theme encompassed five sub-themes relating to the process of maintaining hopefulness in old age. The first two reflect historical and motiva- tional dimensions of hope, which we describe as a ‘legacy’ and ‘self-activating hope’, respectively.

Legacy of hope

Hope appeared to be embedded in participants’ developmental histories, apparently learned guidance or observations of parental (often fathers) accomplish- ments and beliefs: ‘Where do I get my hope from? I think it’s me father . . . he hoped for everything. I think that’s a little bit of me’ (P 6). Early relationships with parents, allowed a sense of connectedness where intimacy and attachment were intrinsically linked with current hope. The contrast was seen in the descriptions of one participant who did not have a close relation- ship with his father: ‘I guess I was always slightly lacking in self-confidence really, a bit introverted. My father . . . he was just the opposite. A great extro- vert. . .whether that sort of pushed me into silence . . . I don’t know’ (P 8).

For some the role of society was also important in their development of hope: ‘I think it’s this country. I wouldn’t like to live anywhere else. So I suppose I find my hope in my country and my family’ (P 4), but participants did not anticipate change in their sense of hope due to age-associated decline in abilities, proba- bly because of the intrinsic nature of their hopeful beliefs: ‘Well I think it’s natural to have hope . . . I suppose there is something in the brain that has been preserved and hasn’t been destroyed . . . ’ (P 8).

While internalized hopeful beliefs were present in all accounts, there were few reports of future- orientated hope and where these existed, they were mostly aspirations for the welfare of family and ‘passing on the legacy of hope’ to them: ‘I mean hopes now are for my son and his wife and their two boys’ (P 10) and for some – usually participants without family, the future of society and the world was seen as important: ‘Never a war again I hope! . . . for anybody’s sake . . . peace in our time’ (P 7).

Overall, participants’ descriptions of hope sug- gested that it develops in childhood and survives health and social circumstances in old age, to be passed onto families and wider society.

Self-activating hope

The internalized hope that participants described was not simply something that enabled them to face the future, but served as a way of helping them to continue to live in the present. Hopeful beliefs appeared to

provide participants with an attitude or an approach to life that engendered a sense of energy which mobilized them in the present: ‘If at first you don’t succeed, there is no use giving up – if you don’t hope for things you don’t get them!’ (P 9).

A hopeful attitude appeared to frame the difficul- ties associated with aging and dementia as challenges to be overcome: ‘I can’t really see this condition (Alzheimer’s disease) getting any better. But I have started . . . it’s a little step . . . I have started going to the gym’ (P 8), and one commonly reported way that hopefulness appeared to generate action was through reminiscence, drawing on autobiographical memories of survival and success: ‘It [war] was an awful time but you see there was nothing you could do about it you had to grin and bear it’ (P 4).

The next two sub-themes suggest that hopes are framed within a realistic appraisal of hope-hindering life experiences, encountered due to the effects of aging and memory loss on personal resources.

Personal realism

All participants in this study possessed a good under- standing of their current difficulties and limitations (see Table 2 for GRAD scores). Descriptions of limitations associated with aging, dependency and the inevitability of death were apparent in all the transcripts: ‘She has to help me . . . I don’t do anything for her. I can’t even keep the garden’ (P 8) and participants also freely described their limitations due to dementia, speaking knowingly about their decline and their current abilities: ‘I’ve only witnessed a sliding down, it’s only a slow rate of progression . . . but I feel sometimes that I’m worse than I was a year ago’ (P 8).

While many participants shared their feelings of sorrow concerning the things that they had lost, they were reconciled to the prospect that their condition would not improve. Only one participant described her desire for a cure which she acknowledged was a ‘false hope’: ‘They haven’t come up with a cure for memory yet and I don’t think that they will’ (P 1).

Contextual realism

Participants shared a thoughtful appraisal of the hope-hindering limitations that they encountered in social situations, describing the way they were treated by others and their position within society. Feelings of loss of role and respect, loneliness or being ignored were described: ‘I tend to get left out a bit, not because anybody intended to do that they just don’t hear. If I make a comment, it’s not heard. They just don’t hear’ (P 8). A realistic view of the prospects of the nation also seemed to be pertinent in shaping participants’ hopes. Many demonstrated a good knowledge of current affairs and the world ‘nowadays’: ‘I am thankful that I am coming to the end of my life now, because of the way the world’s going’ (P 5).

454 E.L. Wolverson (Radbourne) et al.

The final sub-theme describes how participants achieved realistic hope.

Re-appraisal and resolution

Although all participants described a inherent hope- fulness for something better, underlying this was a sense of realism concerning their personal limitations, societal restrictions, the knowledge that they were not going to ‘get better’ and that they may have to let go of old hopes that were no longer realistically feasible. Consequently, accounts of hope as an expectation of achieving a desired goal did not emerge and many participants spoke about ‘hoping for less’: ‘I mean a lot of older folk don’t want the same’ (P 7).

However, it appeared that by letting go of old hopes and adjusting their expectations, participants were able to embrace new hopes and find new ways of being in the world, thus describing a degree of acceptance and having made peace with their situation: ‘On the whole I haven’t done so bad for myself ’ (P 9).

Some participants indicated that they were content with their current life which was both meaningful and rich. Half the group explicitly stated that they were happy: ‘I mean there’s nothing I don’t think, that I would have like to have done, that I haven’t done’ (P 4).

Many felt that they could not complain about their current situations since others were ‘worse off’ than them. Thus comparing their own situation with that of others appeared to facilitate hope and linked to the next higher order theme of positive attitudes in early-stage dementia: ‘I always say there are folks far worse off than me. When I see people in a wheelchair or in a bed I think . . . oh thank God I’m alright’ (P 6).

‘Keep living and keep living well’

This higher order theme encompassed three sub-themes relating to the process whereby ‘realistic hope’ allowed active hoping for the maintenance of current quality of life. This ‘active hope’ was general- ized but appeared to engender positive attitudes towards aging within three key sub-thematic areas: maintaining health, maintaining relationships, and positive coping.

Maintaining health

Key for maintaining quality of life for all participants was the hope of maintaining health, in terms of both physical health and a hope that their memory would keep with them for as long as possible. Participants described good health as vital to all their other hopes: ‘As long as I can get about, and I’ve got my health that’s everything’ (P 3).

For all participants maintaining health was seen as an important precursor to continuing their activities of daily living and associated independence, which in turn elicited a strong sense of hope. Independence through functional activity was a hope expressed by all

participants: ‘That I can do my own housework . . . pay my own bills. That’s just what I hope for until I die’ (P 6).

Maintaining relationships

All participants expressed a hope to remain connected with other people, particularly family. The importance of family, particularly regular contact with children in maintaining hope was striking: ‘Without her [my daughter], I don’t think I’d be here now’ (P 5).

Social contact was frequently cited as important for maintaining hope. The memory clinic (which offers early interventions for people with dementia) was often cited as one way of keeping in touch with people and maintaining hope, and two participants would have liked more social opportunities: ‘Its nice to meet people and know there in the same boat as you . . . I like com- ing here, [memory clinic group] I enjoy the company, the nice people and the mix, it’s a break’ (P 6)

Positive coping

Participants described ways in which they used coping strategies to maintain a sense of hope, such as ‘taking one day at a time’ where hopes were framed in terms of maintenance of current functioning and daily routines: ‘You just take each day as it comes’ (P 3).

All participants spoke about the importance of ‘keeping busy’ in maintaining hope, where activity counteracted reductions in hopefulness. The most valued form of ‘keeping busy’ was ‘to get out of the house’: ‘I think getting about a bit, I think that is half the battle’ (P 3).

Discussion

This study provides an insight into the experience of hope in a group of older people living with early-stage dementia. Hope is described as an active process whereby a developmental history of ‘learned hope’ remains well-preserved, represented by a belief that there is ‘something better’. This in turn facilitates the person to ‘keep going’ and to view the difficulties they encounter as challenges to be overcome. We will next compare the results with existing conceptualizations of hope and related theories of hope in old age, and then consider the facilitators and barriers to hope in older people with early-stage dementia.

Participants’ accounts (Table 2) were consistent with three aspects of the hope literature outlined in Table 1. Two sub-themes associated with ‘self- activating hope’ and ‘positive coping’ reflect existing literature portraying hope as an active sense of force or energy (Averill et al., 1990; Herth, 1988; Morse & Doberneck, 1995; Owen, 1989; Snyder, et al., 1991). The existing notion that hope involves support from others (Dufault & Martocchio 1985; Miller, 1985; Morse & Doberneck, 1995; Obayuwana & Carter, 1982; Stanley, 1978) is seen in three sub-themes within

Aging & Mental Health 455

this study (‘the legacy of hope’, ‘personal realism’, and ‘maintaining relationships’). The context of uncer- tainty (Fryback, 1991; Herth, 1988; Miller, 1985; Morse & Doberneck, 1995; Nowotny, 1989; Stanley, 1978) that is often encountered in aging and long-term conditions is seen in three sub-themes – a ‘contextual realism’ associated with societal attitudes to age, ‘re-appraisal, balancing, and resolution’ with regard to disability and an acknowledgment of the importance of ‘maintaining health’.

The data is consistent with two age-cohort-related findings seen previously in studies of hope in older people without dementia, namely, the relative absence of future-orientated goals relating to ‘the self ’ and the apparent absence of hoped ‘for’ achievements, goals, or outcomes (Farran et al., 1990; Herth, 1993). In explaining the first of these, we suggest that older people may have their own unique interpretation of the future. Our data is congruent with this view since future-orientated hopes were only seen in the passing on of a ‘legacy’ to children or to the world in some way. The presence of ‘world-related goals’ in the older person has been found in other studies. For example, Nurmi (1992) suggests that such goals reflect attempts to generate meaning and integrity. The notion of a ‘legacy of hope’ of wanting to leave something behind for others is often considered a natural part of old age, and the capacity and wish to pass on wisdom to others can be seen as reflecting developmental tasks relating to ego integrity in later life (Erickson, 1977). In understanding our second cohort-related finding (i.e., the absence of goal attainment and outcomes), we suggest that participants displayed a generalized rather than particularized form of hopefulness. Dufault and Martocchio (1985) propose that particularized hopes are characterized by the expectation that what exists at present can be improved on, while generalized hopes serve to preserve personal meaning and to protect against despair, existing when a person is deprived of particularized hopes. This group of older people with early-stage dementia were realistic in their expectations of ‘cure’ or improvement in their condition, but demonstrated the generalized sense of hope described in accounts of older people without dementia (Dufault & Martocchio, 1985) and in those living with chronic or life threatening illness (Miller, 1985). Dufault and Martocchio (1985) describe generalized hope as the ‘motivation to continue with life’ and this was evident in the nature of participants’ maintenance-focused goals to ‘keep living and keep living well’ by main- taining health and relationships.

While all participants vehemently denied that they were hopeless, it was notable that their descriptions of hope appeared to lack saliency. Hopes were not ‘yearned for’ or desired, but were instead grounded in a sense of realism with expectations aligned to limitations. The socio-emotional selectivity theory of aging (Lockenhoff & Carstensen, 2004) adds perspec- tive to our data indicating an apparent diminished saliency of hopes, including hope ‘for’ goals

or achievement. Participants may have adjusted to the challenges of age and dementia by adjusting the personal saliency of specific hopes, which then acted to protect them from despair when goals were unattainable and also allowed them to continually redefine and readjust their hopes in line with the changing reality of their lives. Socio-emotional selec- tivity theory suggests that in old age there is a timely process of goal re-organization in response to perceived limitations and an increased awareness of personal mortality whereby goals related to deriving emotional meaning from life are prioritized over goals related to expanding horizons, so that current well-being is prioritized over the acquisition of new information. These goal shifts are thought to be adaptive, resulting in greater emotional well-being and satisfaction with social support networks, despite the challenges of advancing age. Indeed, participants in our study who balanced hope with reality frequently described a sense of ‘a life well-lived’ and most of them also described their lives as satisfactory, in comparisons with others of their age who they saw as worse off (e.g., ‘when I see people in a wheelchair or in a bed I think . . . oh thank God I’m alright’). This finding contrasts with the view from a study of nursing and care staff that cognitive impairment obstructs the opportunity for hope derived from comparisons with others who are perceived as less fortunate (Cutcliffe & Grant, 2001).

Our study suggests that a pre-requisite to goal adjustment and re-appraisal is the grounding of hope in reality and openness to one’s limitations or the pain that inevitably accompanies this. The notion that hope is grounded in reality has been previously acknowl- edged (Farran et al., 1995; Moltmann, 1975) and distinguished from constructs associated with short- term defence mechanisms, such as wishing or denial. The view that it is possible to remain positive and hopeful about the future in the face of a seemingly hopeless situation (such as the progressive condition of dementia) is not without controversy. Skeptics argue that hope and ‘true realism’ cannot co-exist in such circumstances, suggesting explanations of ‘denial’ or social conformity (e.g., ‘wanting to appear a good patient’ or ‘acting in accordance with social rules and others’ expectations’) as more relevant (Kellehear & Fook, 1989). Our in-depth qualitative interview data go some way to challenging this skepticism and add to the documented evidence of the existence of hope in people with other deteriorative illnesses (Hinds & Martin, 1988; Nowotny, 1989) including that of Herth (1990), who noted that the degree of hope reported by patients with cancer increased as signs of disease progression became evident.

The overlap between generalized hope and other positive psychology constructs such as resilience and optimism is not clear and further research is needed to delineate these in older people with and without dementia. Resilience, like hope, has been conceptua- lized as an adaptive human capacity, preceded by aversive circumstances and believed to have its

456 E.L. Wolverson (Radbourne) et al.

developmental basis in early childhood. However, unlike hope, which is often regarded as a ‘trait’, resilience is described as patterns of positive adapta- tions under extenuating circumstances and has been defined as ‘the process of, capacity for, or outcome of, successful adaptation despite challenging or threaten- ing circumstances’ (Masten, Best, & Garmezy, 1990, p.426). A theoretical model of psychological resilience in older age, which examined the relationship between esteem, interpersonal control, and competence (Windle, Markland, &Woods, 2008), described the notion of the ‘resilient self’ – a capacity that may well-contribute to help a person to initiate or maintain the hope. Optimism can be defined as a disposition that expects the best possible outcome. Like some conceptualiza- tions of hope (Table 1), optimism is goal-orientated and activated when significant value is attached to a desired outcome (Carver & Scheier, 2005). Optimism differs from hope in that it is more constricted in both affective and cognitive domains. Optimism and hope may well complement each other in that optimism may be a necessary pre-requisite to hope or function simulta- neously to help a person to adopt a hopeful position. However, the construct of optimism may be less relevant to older people with early-stage dementia, given the aforementioned cohort-related absence of hoped ‘for’ goal-related outcomes.

While our findings resonate with conceptualiza- tions from the existing hope literature, they also share similarities with the more specific – although much more limited – existing literature on hope in older adults (Farran, 1985; Farran et al., 1990; Herth, 1993). These suggest that there are similarities between older people’s experiences of hope irrespective of dementia. In older people with and without dementia, increased infirmity, impairments and/or losses, and an assumed need for greater reliance on others are described as potential barriers to hope. However, dementia-specific barriers to hope were also evident, in the attitudes of others and experiences of loss of role, loss of respect, and no longer being listened to. Taken together, the hope-hindering data we describe provides support for the ‘double stigma of age and dementia’ (Moniz-Cook & Manthorpe, 2008).

Study limitations and future research

This cross-sectional study cannot reflect the longitudi- nal experience of hope, particularly in advanced dementia, and the longitudinal study of hope in people with dementia remains an important future area of enquiry. The losses in autonomy and increasing disintegration that may confront people in later life may tip the balance from hope to despair (Erickson, 1977), particularly in a deteriorative disease such as dementia, where older people can express considerable fear about future autonomy due to the loss of functional abilities (Moniz-Cook, Manthorpe, Carr, Gibson, & Vernooij-Dassen, 2006). This assumption

requires testing given that studies of individuals with cancer note no significant differences in levels of hope among individuals at various phases of their illness (Stoner & Keampfer, 1985).

Other methodological limitations relate to the small study group and sampling issues. First, our sample was homogenous in terms of age: the mean age of the sample was 81.1 years, which might explain the lack of future-orientated goals. Second, the majority of the sample was female and notably fathers were often cited as influential in the development of hope. Third, only two participants were married, yet all cited that hope is dependent on others. Fourth, people with significant depressed mood were excluded as depression is often linked with hopelessness. Fifth, participants were all volunteers, who were in receipt of post-diagnostic practical and psychological support at the memory clinic and all had received a stigma-neutralizing diag- nostic disclosure intervention (Moniz-Cook, Gibson, Harrison, & Wilkinson, 2008). Future larger scale study is needed to overcome the potential selection bias towards people who might have been pre-morbidly higher in hope by validating these findings of hope against other sub-groups with early-stage dementia as well as by exploring the effect of diagnostic disclosure programs and the availability of timely psychosocial support on the maintenance of hope. For example, as stigma and beliefs surrounding age and dependency are known barriers to hope (Moniz-Cook & Manthorpe, 2008), future studies need to examine the effect of specific stigma-neutralizing interventions of the main- tenance of hope and the relative contribution of physical disability and mental ill health in the main- tenance of hope in dementia.

Conclusions

To the best of our knowledge, this is the first in-depth study of the subjective experience and the meaning of hope in older people with dementia. It complements a recent exploration of hope in family caregivers of people with dementia who describe how they counter- act ‘fading hope’ by ‘renewing everyday hope’ (Duggleby et al., 2009). Despite its sampling-related methodological limitations, we found that there were more similarities than differences with the literature on older people without dementia. Hope is vital and present in the lives of people with early-stage dementia, who have the capacity to make rich contributions to research exploring specific positive aspects of their lived experiences.

Given the not insignificant threats to hope asso- ciated with the double stigma of age and dementia (Moniz-Cook & Manthorpe 2008), empirically driven methods to support and develop hope in people living with dementia are needed. Hope-fostering strategies have been described as those that function to instill, support or restore hope by facilitating the hoping process in some way (Herth, 1990). Given that the data

Aging & Mental Health 457

highlights the importance of health status and social circumstances (family, others, and society) in the maintenance of hope interventions to promote health and social engagement early stage dementia may be important hope-fostering interventions for practi- tioners to consider. Perhaps more crucially, is the need to address the stigma around dementia and to challenge the structural constraints imposed by society on those living with dementia. The impact of hope in care staff on clinical outcomes is important in dementia care (Spector & Orrell, 2006). Future research on hope in dementia could also explore the effect of attitudes about hope and dementia held by others (such as family members, the range of health care professionals, lay people, and the local clergy) on the hopes of people living with dementia.

As dementia care turns towards the enhance- ment of quality of life, both research and practice developments requires to account for the variables that contribute to the well-being in dementia, including other constructs from the discipline of positive psychology such as humor, joy, courage, and love.

Acknowledgments

Authors thank all the staff at the Memory Clinic for support in recruitment to this study.

Ethics

Formal ethical approval for the study was granted by the Hull and East Riding Local Research Ethic’s Committee in March 2007, REC reference number: 07/Q1104/27.

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