Subjective quality of life of those 65 years and older experiencing dementia

Abstract

Background/Objectives

To describe how people experiencing dementia define quality of life and how this may be supported.

Design

Qualitative descriptive component of mixed methods cross-sectional study.

Setting

Western Canadian community (4-h weekly care minimum), supportive housing (24-h support/supervision), personal care homes (24-h nursing).

Participants

One hundred and thirty-six persons aged 65+ experiencing dementia.

Measurements

Semi-structured interview questions. Rating of meeting life’s goals.

Results

Participants characterised quality of life as: freedom, independence, having basic needs met, physical health, engagement in meaningful activities and tranquility. A need for self-determination/choice was evidenced across all domains. Increased access to skilled nursing care, support for meaningful engagement with family and meeting life’s goals were endorsed as adding most to quality of life; 43% reported meeting all life’s major goals.

Conclusion

People experiencing dementia may have better quality of life when choice/self-determination is supported. Enhancements in care environment, independence, engagement and meeting of life’s goals merit urgent attention.

Keywords

dementia aged quality of life self-determination

Introduction

Dementia, generally resulting from a progressive brain disease, may cause irreversible decline in physical and global intellectual functioning, typically over a period of years, ultimately leading to complete debilitation and death (Volicer, 2007). Numbers of people living with dementia are escalating in many countries as their populations age, because dementia becomes more prevalent in old age (Draper, 2011). There are currently 800,000 people with dementia in the UK (Alzheimer’s Society UK, 2012); it is estimated that this number will rise to one million by 2021 and over 1.7 million people by 2051 (Alzheimer’s Society UK, 2012). Reports also show that one in three older adult dies with dementia in the United States; an increase of about 68% from 2000 to 2010 (Alzheimer’s Association, 2013) which is noteworthy, since deaths from other major diseases, such as heart disease, HIV/AIDS and stroke continue to decline (Alzheimer’s Association, 2013). Dementia greatly influences personal, social, health and economic factors, and considerably impacts the quality of life (QoL) of those with the condition and their family caregivers. These family caregivers provide considerable support, incurring substantial personal costs but providing health budget savings over £8 billion a year in the UK (Alzheimer’s Society UK, 2012).

QoL may be viewed as people’s perceptions of their position in life in the context of their particular culture and value systems and in relation to their personal goals, expectations, standards and concerns (World Health Organization, 1995). QoL therefore can be known only to the individual concerned (Patrick, Kinne, Engelberg, & Pearlman, 2000) and represents the person’s expectations and the reality of his or her situation (Carr, Gibson, & Robinson, 2001). Since perceived QoL is highly subjective and multi-factorial (Ready, 2004; Sousa et al., 2013) it is also one of the four key concepts related to successful dementia care (Lawton, 1991). QoL has also been defined in terms of the gap between a person’s expectations and the reality of his or her situation (Carr et al., 2001). It has been known for many years that if there is a wide discrepancy between expectation and reality, then QoL is low. Similarly, at the end of one’s life, one must be able to reflect on that life and conclude that it has been meaningful and complete (Carr et al., 2001). Since QoL may be highly reflective of how satisfied people are with aspects of their lives that are important to them (Brown, Raphael, & Renwick, 1999), it is imperative that urgent attention be placed on the need to undertake not only how QoL of the person with dementia may best be addressed over time, but the dimensions of this subjective QoL as well.

Successfully appraising QoL using proxy respondents, who are often relied upon when persons have difficulty in speaking for themselves, is challenging (Banerjee et al., 2002; Hughes & Dove, 2004; Logsdon, Gibbons, McCurry, &Teri, 2002; Menne & Whitlatch, 2007; Perry & Felce, 2002; Ready, Ott, Grace, & Fernandes, 2002). Proxies are generally poor at predicting a person’s preferences for treatments and have difficulty in balancing altruistic decisions with their own emotions, feelings and beliefs (Buchanan & Brock, 1989; McCormack, 2002). Owing to questions surrounding the reliability of the self-rated responses of people with dementia due to challenges with insight, judgment, impaired communication and memory function, it is critical to undertake rigorous studies designed to ‘give voice’ to people experiencing dementia regarding their views on their QoL. However, the extent to which this will provide reliable data merits careful consideration. Even though the DEMQOL system has been validated in the UK in a large sample of people with dementia and their caregivers and thus provides separate measures for self-report and proxy report across a wide range of severity in dementia, the authors conclude that additional research is needed to address the psychometric challenges of self-report in dementia (Banerjee et al., 2002).

The Cornell Brown Scale for Quality of Life in Dementia (2002) demonstrated ratings which were based on a brief, joint interview with caregivers and patients. The findings indicated that the scale demonstrated adequate interrater reliability (intraclass r = 0.90). Since reliability and validity were not adversely affected by patient cognitive impairment, the authors concluded that, preliminary data indicate that the Cornell-Brown Scale for Quality of Life is a brief, easily administered, reliable and valid measure of QoL (Ready et al., 2002). Although useful, the available QoL measures are (necessarily) brief and therefore can only provide limited information about the perspectives of people living with dementia. Therefore, it is important to provide further evidence of these perspectives using qualitative approaches.

de Boer, Mattace-Raso, van der Steen, and Pel (2013) opine that even though the Folstein and colleagues’ Mini Mental State Examination (MMSE) is the most commonly used instrument for screening cognitive function, it is not diagnostic, but may be used to determine the presence of cognitive impairment, such as in a person with suspected dementia. Research by Mozley, Huxley, Sutcliffe, Bagley, Burns, and Challis (1999) supports the assertion that individuals with dementia having an MMSE score > 10 are likely to be ‘interviewable’ on the subject of QoL. Similarly, Friss and Whitlach (2001) reported that those who scored between 13 and 26 on the MMSE were able to respond consistently to questions about preferences, choices and general involvement in decision-making. Also, Logsdon, Gibbons, McCurry, and Teri (2002) determined that those who scored between 11 and 29 on the MMSE were able to reliably and validly rate their own QoL and Beer, Bosboom, Almeida, and Flicker (2009) assert that people with moderate to severe cognitive impairment can reliably rate their QoL.

Since QoL may be highly reflective of how satisfied people are with aspects of their lives that are important to them (Brown et al., 1999), it is imperative that urgent attention be placed on the need to undertake not only how the QoL of the person with dementia may best be addressed over time, but the dimensions of this subjective QoL as well. This study aimed to define QoL as characterised by older adults experiencing dementia and to determine the key subjective factors for improvement. Participants’ ability to express their preferences and engage meaningfully was also noted as this has implications for further research.

Methods

Design

This mostly qualitative component of a mixed methods cross sectional study obtained interview data from people living with dementia to determine their perceptions of what QoL meant to them and how their QoL may be improved.

Cohort and sampling procedure

As reported elsewhere (Stewart-Archer, Afghani, Toye, & Gomez, 2014), participants resided in six Canadian community neighbourhoods (receiving minimum 4 h professional homecare weekly), nine supportive housing facilities (24 h support worker and limited professional nursing care), and 39 personal care homes (PCH) (24 h skilled nursing care) in the same health region and were accessed via the database of those receiving care; every twelfth on a non-alphabetized list. All sites employed dementia-specific programming and staff trained in dementia care. All the participants experiencing dementia were required to be aged 65 and older, meeting Diagnostic and Statistical Manual (American Psychiatric Association, 2000) criteria for dementia, with diagnosis made by a physician, and scored above 9 points on the MMSE (Folstein, Folstein, & McHugh, 1975). These inclusion criteria were used for this study to enhance the reliability, and therefore the clinical applicability of findings and recommendations. Also, it was yet unclear whether or not participants scoring lower would be able to tolerate the rigours of screening and interviewing.

As explained in previous work, well known factors which might be implicated in compromised ability and/or negatively influence QoL such as having a primary diagnosis of Huntington’s disease, alcohol-related dementia, schizophrenia, bipolar mood disorder and inability to speak or write English formed exclusionary criteria (Stewart-Archer et al., 2014). The required number of study participants was determined by the requirements of the quantitative component of the study.

One hundred and forty-one dyads were recruited, with four prospective participants dying prior to being interviewed and one scoring less than 10 points on the MMSE; resulting in a total of 136 study participants (PCH, n = 88; Community, n = 36; and Supportive Housing, n = 12). Most of the participants resided in PCH (n = 88, 65%) were female (n = 98; 72%), of eastern European ethnic groups (n = 78, 57%), had previous occupations at a professional level (n = 44, 32%), educated up to grade VIII (n = 44, 32%) and reported annual incomes of more than Canadian $35,000 (n = 90, 66%). Sixty percent (n = 82) of the participants were widowed. Refer to Table 1 for more information.

Table 1.

Participant characteristics.

Characteristic	Frequency, N (%)
Gender
Female	98 (72)
Marital status
Widowed	82 (60.3)
Married	31 (22.8)
Single	22 (16.2)
Divorced	1 (0.7)
Residence
Personal care home	88 (64.7)
Community	36 (26.5)
Supportive housing	12 (8.8)
Ethnic group
European	78 (57.3)
British Isles	25 (18.4)
Canadian	24 (17.7)
Caribbean	6 (4.4)
Latin	2 (1.5)
Asian	1 (0.7)
Previous occupation
Professional	44 (32.4)
Technical trades	26 (19)
Housewife	19 (14)
Sales/Clerk	19 (14)
Waitress/Hospitality	12 (8.8)
Farmer	10 (7.4)
Stenographer/Typist	6 (4.4)
Education
Grade 0–8	44 (32.4)
Grade 9–11	23 (16.9)
High school	29 (21.3)
Post-secondary	40 (29.4)
Income
<$35k/y	46 (33.8)
>$36k/y	90 (66.2)
Age
Range 65–101
Mean 85.3
SD ± 7.15
Median 87

Measures

Socio-demographic, clinical features and qualitative data were collected via face to face interviews. The three-question qualitative interview guide was based on previous research on QoL (Birch & Draper, 2008; Brod, Stewart, Sands, & Walton, 1999; Mahon & Sorrell, 2008; Ready et al., 2002) which covered a myriad of potential factors and dimensions of QoL, in particular decision-making that values the perspective of the individual and is therefore based upon that person’s ‘history’. This study has extended our understanding of perspectives of people with dementia through capturing their responses to carefully considered questions that are directed at not only determining what is important to that particular individual, but also one very important ‘historical perspective’; whether or not one’s personal goals have been met. Questions were: What is QoL? What would make your QoL better? Have you accomplished your life’s goals? Participants were asked to provide qualitative information with appropriate probes to enhance clarity of responses. The accomplishment of life’s goals was also captured on a Likert scale ranging from: a) attained all major goals (+3) to b) failed to accomplish any major goals (−3).

Procedures

Approval was received from the required Institutional Review Boards, the Health Region’s and the long term care facilities’ Human Research Ethics Committees. Participants received an information package which explained: the purpose of the research, potential risks and benefits, confidentiality, survey instruments, time commitment and required signed informed consents of substitute decision-makers (SDMs) and direct assent from client/resident participants. SDMs granted access to information regarding diagnosis of dementia, verification of age and contact information. Family members or staff made all preliminary contact and the researcher scheduled all interviews for mutually agreeable times. This researcher was trained and skilled in interviewing, and having clinical expertise in working with seniors with dementia, conducted all assessments and interviews. Interviews were set for maximum of 1.5 h per session with participants given the choice to stop whenever they were tired, did not wish to continue, or needed shorter sessions. Participants were reassured, at the outset, that whatever response was provided was the correct response, which decreased anxiety. Participants were allowed to lead the interview, adding whatever information they wished. Their responses were written down by the single interviewer who asked open ended questions and followed up participants’ responses, clarifying as required. Opportunities were provided for participants to express unsolicited opinions. Participants were able to return to questions if they were unable to answer initially.

An invitation was extended to all 136 SDMs and staff to observe interviews with the permission of the participants. All but three SDMs chose not to observe their family members being interviewed after being satisfied with the findings of their personal interview of the researcher’s goals, skills, expertise, techniques, philosophy of care and knowledge of dementia.

Analyses

Demographic characteristics were summarised using descriptive statistics. The results were tabulated as pertained to accomplishment of life’s goals, rationales for not accomplishing same, as well as responses to self-determination/choice. Thematic content analysis was undertaken by the research team. Data were transcribed by the interviewer then read and re-read, with particular views about QoL identified. These units of text were highlighted and descriptive notes written in the margins. The coded units were then labelled as QoL issues. Issues that differed conceptually were given different descriptive labels. The labels were then compared within and between interviews and mutually exclusive themes uncovered. Similar issues were grouped under one heading and data re-coded under domains. Coding and analysis were verified with other qualitative researchers. Only minor differences occurred; due largely in part to the simplicity of the questions and equally non-complex responses, which were resolved by further discussion and re-examination of the transcript. Through this process, QoL was thoroughly examined resulting in a more in-depth understanding of subjective QoL in dementia. Descriptive statements were developed using the participants’ words and the selection of exemplars chosen to communicate the most commonly described themes and elucidate the phenomenon of subjective QoL of those diagnosed with dementia.

Rigour

The trustworthiness, credibility, confirmability and transferability of the study (as defined by MacNee & McCabe, 2004) were also addressed. The clinical experience of the interviewer facilitated the development of a trusting relationship with participants; this, and the consistent data collection protocol helped to ensure trustworthiness as well. An audit trail of notes documenting analysis supported consistency in decision making and the verification of decisions made in conjunction with the research team. The transferability of study findings is supported by a comprehensive description of the participants and study settings. Each participant‘s response was read back to the participant making the statement, for verification of answers, to help ensure the credibility of the findings. Credibility was also supported by the use of exemplars to illustrate the findings that emerged.

Results

Most interviews were completed within 1 h, others within 45 min and all were completed in a single session. Some interviews went as long as 3 h with the researcher following the lead of the participants who wished to reminisce and perhaps digressed at times; but were mostly readily redirectable to the interview process. Ninety-eight percent requested a return “visit” to sit and continue the conversation. Several periods of tearfulness occurred when deceased spouses, dreams, homelands and childhoods were recalled. Participants were highly apologetic when this occurred and resumed the interview without incident. Staff and family were alerted in each of these cases, but no lasting impact was reported to the researcher or ethics committees.

Subjective definitions of QoL.(What is QoL?)

In response to subjective definition of QoL, participants described having: a)

Freedom (25%, n = 34). “Unrestricted desire to do what I want, when I want, how I want,” “sense of limitlessness.” This also included freedom to make own choices. See Figure 1 below for additional information.

Basic needs met (22%, n = 30). That is, having assistance with basic hygiene such as “being clean;” giving the appearance of being provided with a reasonable level of care. Of interest was this response: “Share the work of living with me.”

c) Independence (21%, n = 28). “Needing little or no help,” “coping with old age by yourself” and therefore having the option to choose the degree of assistance that was required.

I want to do more. Not allowed to do much by neither staff nor family. They do it all for you … right down to doing your laundry and putting my photos where they want them. I did this all for years and years. [96 y, Female, Supportive, MMSE = 14]

d) Tranquility (15%, n = 20) as a component of QoL representing environmental and emotional peace and quiet.

My husband always came up behind me, when I was cooking and hugged me. I wish the whole world was as happy as we. I had such a happy life … It makes me smile even now … when I remember the peace … I still need it. [99 y, Female, PCH, MMSE = 14]

A quiet physical environment was valued as it reassured the participants that “all was well” with others. Noise, signifying apparent distress, was quite disquieting as this was perceived as evidence of unmet needs. A peaceful, emotional environment on the other hand, signified absence of upheavals and was indicative of a predictable, chaotic-free, orderly state of being.

Meaningfulness (12%, n = 16). “Doing things that I like, not necessarily what others care for.” This meant involvement in activities and events which provided opportunities for meaningful engagement and met interest; with or without another person. Solitary activities such as knitting or watching a favourite game show or sporting activity on television were welcome. Others preferred small group (3 or 4) activities; still others valued larger groups.

Good physical health (3%, n = 5). A marker of being “not sick, able to move around so as not to depend on others too much,” “confidence of living … being alive,” “all the parts in working order” was a staple for QoL.

Figure 1.

Quality of life defined.

Other views expressed by the remaining three participants were: “That I matter” [83 y Female, Community, MMSE = 13]. “You have to be able to be flexible and adapt. I wanted chicken for lunch, they gave me porridge … oh dear, what to do?” (Laughs). [81 y Female, Supportive, MMSE = 11], and “to be able to have a good laugh … you have to be able to laugh” [92 y Female, Community, MMSE = 14]; completed definitions for QoL. The theme underpinning all these definitions was the need for choice/self-determination. For example, having basic needs met was one of the definitions of QoL, however with the stipulation that the needs were self-identified and met on their terms.

Self-determination/Choice and QoL_SR

As stated above, the theme common to all of the definitions provided of QoL was the need for choice/self-determination to ensure the best possible QoL. Whether in response to their physical health, giving life meaning, emotional or environmental tranquility, having basic needs met, being independent/self-reliant, and having freedom; the ability to choose was always fundamental. In responding to the question: “what is QoL?” 128 participants (94%) stated that if they continued to make even small decisions for themselves, such as guiding personal care, then these acts helped to cement the fact that they were still capable of self-determination. See Table 2 for additional information. Most notably, a small minority however (n = 8), strongly denied being participants in any decision-making whatsoever.

Table 2.

Influences related to self-determination and choice in relation to QoLSR.

Determinants of self-determination and perceived choice
Factor	Influence on factor	No. of participants
Perceived areas of choice	Routines	60
	Friends	33
	Clothing	23
	Being a study participant	12
	None	8
Perceived areas of help required	Basic hygiene	58
	Household management	37
	Financial management	20
	“Myself” – everything	12
	Other	9
Perception of help received	Appreciation	71
	Resentment	33
	Ambivalence	32
Perceived choice of residence	No choice	57
	Joint – with SDM	44
	Yes – per self	35

I need choices. I am not a child… . I have lived through it all. I want to choose who provides care for me and when. [79 y Male, PCH, MMSE = 12]

Despite the fact that slightly less than half of the participants stated that they did not contribute to the decision to choose current residence; a quarter made the choice independently; and a third were actively involved in the decision.

I ran a good household, raised 8 kids well. What did I do to let them think I can’t look after myself? I didn’t even get to choose 1 photo, or hang 1 picture here now. I don’t need help with anything, but everything is done for you. Everything. [90 y Female, Supportive, MMSE = 13]

Even though the majority of participants, as previously mentioned, opined that they continued to participate, even minimally, in decision-making, they were quite concerned about having the ability to choose the level, type and frequency of assistance required. Not surprisingly, most participants identified hygiene and household maintenance as areas where assistance was required due to physical impairment; typically as relate to mobility/musculoskeletal issues and management of finances due to lack of skill (“never done it before”) or cognitive decline (“too confusing” or “too hard”). The category of other for help required included: mobility/ambulation and gardening. See Table 2 for details. Interestingly, the notion “help with myself” was introduced. This concept was defined as “everything to help make me feel like I am living.” However, the greater the level of assistance required, the greater the perceived dependence. This perception made several participants melancholic and one declaring: “They call these the golden years? Well if they are … mine are rusty!” [92 y Female, PCH, MMSE = 12].

What thing(s) would add most to your QoL?

Most participants (28%, n = 38) believed that

a) Staff Competence had the greatest impact on proposed improvement for QoL. That is, staff skilled to provide “reasonable” physical care, “not exceptional or even the best”, “just normal” care. Eighty-four percent (84%, n = 32) of these participants resided in PCH and fell within age range 65–92. See Figure 2 for additional information.

Good physical health (21%, n = 28), specifically ability to mobilize independently, “having physical strength to move around”, and therefore “not having to rely on others much” was the second most frequent response. Fifty-seven percent (57%, n = 16) of these participants resided in the community and 57% fell within age range 85–94.

Surprisingly, the fourth most frequent response was “Satisfied” (18%, n = 24), “would not change anything” as QoL was accepted as “the best it could be.” Fifteen percent (n = 13) resided in PCH, 22% (n = 8) and 25% (n = 3) resided in community and supportive housing, respectively, were satisfied (no changes needed) with their QoL; covering a range in age from 75 to 101.

Having engaged family (17%, n = 23) and friends (2%, n = 3); combined (19%, n = 26) was important, but “a struggle” as many stated friends were either deceased or too ill themselves to visit and family members were otherwise occupied with living their own lives. Regular meaningful contact was appreciated.

Returning to one’s own home was stated by 20 participants. This was quickly recognised however, as “not going to happen” due to physical health concerns, need for greater assistance, death of spouse or inability to cope were the sound opposing rationales. Whilst 75%, the majority, resided in PCH, returning to one’s home was also endorsed by some living in both supportive housing and community settings. Most noteworthy, only one participant linked cognition to improved QoL and stated it thus: having the “ability to still think; use my mind, is what would make things better.” [86 y Female, PCH, MMSE = 14].

Figure 2.

Factors which would improve QoL_SR.

Have you met your life’s goals?

I didn’t get to do everything, but it’s because I wasn’t in a position to do them. So I only did those things I was able to do … didn’t mourn. Just did something in its place. Always plenty to do in the world; make your own choices. [85 y, Female, PCH, MMSE = 15; Satisfied re: goal attainment]

Satisfaction of having met goals

Fifty-nine participants (43%) were satisfied that they had met all of life’s major goals. Essentially, meeting one’s life’s goals meant having no regrets as unable to change things at this stage, “can’t do anything about it anyway, so why waste time and effort fretting?” “Pretty well mastered it all. If I didn’t like something, I left it alone – personal judgment.” [83 y Male, Community, MMSE = 22; Satisfied re: goal attainment].
My head says yes because if I don’t want it bad enough, I will not be looking for it bad or hard enough. I have what I need. [65 y Female, PCH, MMSE = 16; Satisfied re: goal attainment].
From reports, it appears that having a “terrific marriage”, raising good children who are upstanding citizens, and assisting with raising grandchildren afforded a sense of great accomplishment.

Rationale for not meeting life’s goals

Fifty seven (42%) participants stated partially unmet goals; 19 of those were related to lack of educational funds. Three participants stated regrets since no major goal was attained. See Figure 3 for more details.
Figure 3.
Rationales for not meeting life’s goals.

Family togetherness

Family togetherness (having close familial relationships which left little time for anything else) also contributed to partially met goals. Refer to Figure 3 for other contributors. A majority of those participants in the partially unmet group had either never been married (29 females and 2 males) and were unhappy about their single status or were childless women who bore no children (n = 13). This was viewed as a significant “failure” for some and for others: just a “sad thing to happen … you had to be married to have children.” Some were never asked to be wed and due to perceived societal dictates were therefore unable to become parents. Deceased spouse was also a major contributor to partially unmet life’s goals as participants envisioned growing old with their spouses.

Regrets experienced

Inability to play musical instruments and never going to the beach rounded out the factors which negatively impacted accomplishing life’s goals found in the category called other.

Discussion

Like findings from other studies (Maslow & Heck, 2005; Sloane et al., 2005); defining and measuring subjective QoL in dementia continues to be complex, since the study participants applied this to multidimensional constructs such as health, environment, cognitive and functional abilities and subjective constructs such as expectation from life, self-determination and ability to make choices. This study supported previous research (Ettema, Droes, de Lange, Mellenbergh, & Ribbe, 2007; Yap et al., 2008) illustrating the differences in perspectives amongst those with dementia and theoretical models.

Giving the participants voice was integral to this study which generated new definitions of QoL. There have been a variety of life experiences contributing to QoL identified in previous studies, including physical health and financial stability (Logsdon et al., 2002, Maslow & Heck, 2005, Sloane et al., 2005). The study reported here identified further QoL dimensions in this population. Freedom was endorsed by the majority and defined as having the unrestricted ability to do what they as individuals wanted to do, when, where, and with whom. Embedded within this was the power to engage in the business of living without external control or interference and the capacity to exercise choice and free will. This was not only viewed as a right, but a need for one to be able to feel and be human. There were concerns raised with regard to perceived disregard for age, life skills and agency such that prior accomplishments were apparently ignored. Nursing practice should incorporate reliable methods of facilitating choice and free will which are inherent in the art of nursing.

Most noteworthy, having basic needs met was the only subjective measure of QoL that included participants from all three residences and both genders and denoted the breadth of appeal. Having basic needs met, as defined, would invariably help to promote feelings of wellbeing and caring. That is, having assistance with basic hygiene care needs which helped them to maintain previous hygiene standards. This would foster a partnership, a collaborative venture where skills were joined in a relationship of mutual respect with staff and care providers to promote “the work of living”. Assistance with basic care needs also emphasized the social and personal requirements of those who need some assistance with daily activities and health care, but who desired to age with dignity. It is an important distinction, in that the design of housing, services, activities, staff education and so forth should be truly resident-centred and resident-directed.

Independence, the third construct, highlighted the need for little or no help and underscored self-reliance. What made life quality was being able to face life without help by being a perceived financial or physical burden. If one required assistance, then others now hold responsibility for their welfare and may now very well provide direction. This was often viewed as detrimental as reasonable dependence upon self was in danger of being eroded. Others even viewed this state as reverting to childhood where a responsible adult “took charge.” Generally, participants felt that they had taken full charge over their lives for decades, had fully embraced and successfully negotiated this charge and valued the results immensely. They held firmly that they had earned the right to be independent and should assistance be required, care providers and family must be aware that people, even those experiencing dementia, have the wherewithal to select the type, quality and quantity.

Humans have an innate awareness of their environments and seek out environments with certain qualities to satisfy their need for safety and security and physical and psychological comfort. Living in environments conducive to emotional quiet and peace was highly valued by study participants who equated tranquility with QoL. They resided in all three types of residences and valued being able to be at peace with the Creator and nature; others described this as “being still”. Perhaps most importantly the environment may create or increase stress, which in turn may result in mental health concerns such as impaired mood states, anxiety and physical concerns such as muscle tension and higher blood pressure. The presence of noise and loud vocalizations was experienced as unsettling and chaotic as it gave some the impression that people were not being well cared for, needs were unmet, and still others felt that people were being “overlooked or ignored.” This seemed to generate unspoken fear and anxiety and a sense of impending “helplessness” to be avoided at all costs. This may well explain the negative impact that noise has on behaviour; often a trigger to violent or reactive episodes. Stress is an important medical consideration, and creating an environment that reduces stress is a key piece of improving health outcomes.

Historically, the study of meaningfulness in life has taken three routes based on the work of Victor Frankl (Bailey, Eng, Frisch, & Snyder, 2007) which emphasized finding value in life in order to attain meaningfulness. Creative values were reached through acts of creating or producing something. Experiential values were actualized through the senses, and attitudinal values were reserved for individuals who could not, for one reason or another, have new experiences or create new things. Meaning was therefore found through adopting a new attitude that allowed “suffering with dignity.” It was this inherent sense which allowed for the pursuit of these values and consequently experiencing a meaningful life. Meaningfulness was synonymous with what made life quality for some and defined as “doing things that I like, not necessarily what others care for.” These participants considered themselves individuals who wished to preserve their distinctiveness. Everyone was viewed as having differences that made each person unique. The greatest concern for this group was the melting pot mentality which they viewed as “so wrong” because the essence of uniqueness needed to be enshrined and protected. They seemed to not be opposed to the idea of group or team activities, however meaningful engagement was important with many opportunities to “be yourself” even if it meant being “by yourself” to preserve meaning and worth. Alone time was viewed as a necessary option. Staff and family need to be aware of what provides meaning for individuals, preferences for leisure activities and be able to balance and accommodate desired periods of being alone versus isolation and its negative sequelae.

Physical health defined as “having the confidence of living … all parts working … being alive” was self-explanatory. The concept of all parts in good working order was clarified to be more in keeping with the reality; that perfect health was not expected at their age. Being able to mobilize independently even with cane, walker or wheelchair, however was seen as optimal. Of note, no one residing in supportive housing (25% used mobility aids) selected this as a definition which reflected the preceding that being able to mobilize was held by some to be one of the key indicators of good QoL. Mobility was vital if participants were to maintain independent living. Restricted movement affected the performance of most activities of daily living and impaired mobility contributes to deconditioning continuing the unending cycle. This appeared to support the need for routinely incorporating mobility assessments and promoting the use of those mobility aids, as well as provide the necessary ongoing education about exercise therapy, ambulation, joint mobility, fall precautions/prevention and positioning given the impact on QoL.

Presence of freedom, having basic needs met, independence, tranquility, meaningful engagement and good physical health appeared to be intertwined and related at various levels (see Figure 4).
Figure 4.
Interrelated nature of QoL_SR for those experiencing dementia.

When taken as a group of inter-related factors; having freedom and basic needs met may well enhance independence which may result in emotional tranquility particularly in the presence of good physical health chiefly when combined with meaningful engagement. If the opposite occurred, then the cycle was broken. That is, if basic needs were unmet, then this may result in dependence and emotional tension, which may decrease not only meaningful engagement, but physical and emotional health which may heavily impact freedom. This cyclical representation or model may be helpful in evaluating what makes life quality in dementia and may be worthy of further study.

Participants identified staff competence as the main factor which they perceived might improve their QoL_SR. The expectation appeared to be for basic personal nursing care and defined thus: ability to “give reasonable physical care, not exceptional or even the best”, “just normal” care and “know what they are doing”. Many of these participants had been caregivers or care providers, or even worked in the healthcare field and seemed to speak knowledgeably of the type of care they required. Interestingly, 84% of those in PCH, 33% in community and 25% in supportive housing cited this as the means to improve their QoL. Given the unexceptional, the non-expert, the not best care criteria, seemed that the bar had been set quite low. Members of the nursing team are trained to provide reasonable care which involves maintaining assessment and intervention skills at acceptable clinical and professional levels. This appeared to be a reasonable expectation; one which the nursing team could most certainly strive to surpass.

Physical health, or “having the physical strength to move around,” was endorsed by 43% of those in PCH and 57% of those in the community. No one in supportive housing referred to this. The ability to mobilize was tied quite closely to independence, freedom and peace of mind, key components of QoL as per this study’s findings. A clear understanding of the various factors that cause or contribute to immobility and ageing must guide successful intervention. Management may focus on secondary prevention targeting maintenance of function and prevention of complications. Primary prevention is a process that lasts throughout the entire life span, is episodic, and may involve internal factors such as pain, perceptual disturbance and decrease in musculoskeletal function. External factors such as lack of therapeutic programming, characteristics of care providers and family, nursing care delivery systems and institutional policies may be barriers and an examination of these factors may be indicated given that being able to mobilise optimises QoL.

The need for more engaged family and friends was mentioned as another key way to enhance QoL. Participants were quite mindful of the difficulty given the advanced ages, ill health, time and distance for family and friends to travel to visit as they were thought to be occupied with living their own lives. Participants did not view this as an indictment, but rather a statement of fact. Participants craved regular meaningful contact via visits (highest preference), however telephone calls or letters were appreciated. Some participants had begun to use electronic methods of communicating, including social media. This may be an effective way in which to engage younger family members to become more involved. Engaged family and friends typically provide reassurance, support, comfort and the much needed close or intimate touch that is key, but which may be a boundary issue for healthcare providers.

Erik Erikson’s (1950) eighth psychosocial developmental stage, Ego Integrity vs. Despair, postulated that as people age and gain 65 years and over, their level of productivity tended to slow and life was then explored in light of being a retired person. Accomplishments were contemplated and the sense of integrity was developed if they saw themselves as leading successful lives. If the vision was that of an unproductive life, past guilt or unaccomplished life goals, they became dissatisfied with life and developed despair, often leading to depression and hopelessness. Success in this life stage would lead to the virtue of wisdom. Wisdom enabled a person to look back on life with a sense of closure and completeness, and also accept death without fear. Satisfaction with life has been measured in relation to economic standing, amount of education, experiences and people's residence. Remarkably, 25% of participants who reside in supportive housing, 22% community and 15% of those in PCH registered satisfaction; “would not change anything” as QoL was deemed “the best it could be”. Life satisfaction may be viewed as the perception of the summation of one’s past, current, and future life and may be assessed in terms of mood, satisfaction with relations with others, achieved goals and self-perceived ability to cope with daily life. It is having a favourable attitude towards one’s life as a whole rather than the current life segment. Participants agreed they were kinder, gentler, less critical of themselves and became friends to themselves. They seemed to share the view that life and longevity were gifts and therefore expressed caring less about what people think. Being satisfied with life was a pleasantly unexpected finding which was noteworthy. Having successfully negotiated this developmental stage, participants displayed healthy personalities and acquisition of basic virtues which were characteristic strengths central to resolving subsequent crises. This spoke to social competence and must be honoured.

QoL results from the interconnection between people and the environments in which they live (Brown et al., 1999). Diminished QoL for people with dementia in residential care settings has long been recognised (Bowie & Mountain, 1997; Maddox, 1963). The rise in assisted living environments appears to be in response to the negative stereotype of nursing homes (Zimmerman et al., 2005) typically institutional in character and appearance. Research shows that most people prefer to be cared for and to die in their own homes (Reimer, Slaughter, Donaldson, Currie, & Eliasziw, 2004) however, only 21% of deaths currently occur at home and 17% in PCHs (Blasi, 2002). For those who have progressed beyond the early stages of dementia, remaining at home however may not be a realistic option. Returning home completed the factors which were identified for enhanced QoL. Participants recognized that this was impossible for a myriad of reasons such as physical impairments which compromised safety however, the desire and faint hope remained. Home was viewed as security, fond memories, love, last bastion of independence and a sanctuary. Leaving home was a major loss for some and signified “the beginning of the end.”

Adjustment to new living situations was a major source of stress, loss and uncertainty which may result in changes in mood. Depression, anxiety and other emotional issues frequently negatively impact QoL (American Geriatrics Society, 1997) and depression is often overlooked in dementia even though a common finding (Bullinger, 1997). Investing in staff training for recognition of depression and developing care standards that genuinely promote good assessment practices are likely to improve QoL since effective treatments are available. Clients and SDMs need to seriously consider where those with dementia reside. Given the findings of this study, the care team’s responsibility is to work with clients and family members to: preserve and optimise function and QoL to prolong residence in familiar surroundings; establish a plan for preference in residence in the future and seriously consider appropriate programming, nursing policies and service geared towards eliminating the difference.

Life’s goals met

Life satisfaction may reflect experiences that have affected a person in a positive way. These experiences have the ability to motivate people to pursue and reach their goals (Bailey et al., 2007). It is through the realization that one is the sole being responsible for rendering life meaningful that values are actualized and life becomes meaningful (Feldman & Snyder, 2005). Inability to meet one’s goals appeared to stem from either stated lack of funds or being too busy living (See Table 2). Aborted post-retirement plans such as when a spouse dies early or inability to have children hampered others.

Meaning is found when one realizes that one is capable and able to effectively achieve goals through successful management. Researchers (Feldman & Snyder, 2005) specified control as a cognitive model whereby people strive to comprehend the contingencies in their lives which enable them to attain desired outcomes and avoid undesirable ones. From this feeling of control, meaningfulness is achieved when one feels able to effectively achieve goals. Generally, if sense of purpose or belief in having achieved life’s goals was present, then participants experienced higher levels of QoL_SR. Most revealingly, participants expressed overall satisfaction with having lived a “good” life – good: parents, spouse, kids, job singly or in various combinations. Others, even with several challenges, had come to the place where they accepted life as “fate,” “this is, what God wanted” for them and they are “not ones to complain” – a philosophical way of being. Since goals are typically not cast in stone and reflect current best judgment they are subject to revision as life changes. Assistance may therefore be required with regards to information, knowledge, resources or skills needed to achieve realistic goals.

Self-determination

Greater self-determination in terms of choosing level of assistance required appeared to be reflective of higher QoL_SR. Those expressing either ambivalence or resentment were evenly divided, and even though deemed nursing care “good” at times, believed that the care was not at the level, type and frequency they required. Being an active participant in making individual choices was of inordinate significance. Autonomy, therefore, should be preserved by incorporating the person’s opinions, when possible, in decision-making about his or her own life.

Autonomous individuals have a greater need for mastery and control thus placing a strong emphasis on personal accomplishments. This study clearly showed that having the ability to reflect on one’s life at life’s end and conclude that it has been meaningful and complete was highly valued. By understanding the illness representations of those with dementia, clinicians may provide information and support related to the meanings affixed to the life lived, effective transformation and evolution of the self, and summing up one’s life for them and their families. This will hopefully facilitate more congruent representations between expectations from life and the current real situation.

These findings clearly supported the notion that active participation in decisions about assistance required for tasks such as routines, hygiene and household maintenance not only improved QoL but was appreciated by most participants. A new finding from this study reflected that choice, specifically about level of assistance required to meet that need, when negotiated, was even more critical to better QoL_SR. Participants eloquently explained that choice had to be embedded in nursing philosophy of care as feelings of resentment could easily overwhelm the nurse/resident relationship. Advocating for and incorporating choice and wishes enhance dignity and the trust relationship. It behoves care providers and families therefore to include as much self-direction as feasible, even in the presence of moderate cognitive impairment. This may pose challenges secondary to anosognosia and the resultant insight and judgment issues. However, best practice stresses that care providers and families meet the older adult where he is cognitively and emotionally, as long as reasonable efforts are made to preserve safety, mediate risk, maintain professional standards and ethics and safeguard dignity. Therefore, for example, should the older adult believe himself to have a more intact memory function than actual fact, unless there are dire consequences, it may be helpful for the quality of the interaction and for person-directed care to continue at the senior’s level of understanding.

Reflecting on mental health, the care ethicist Verkerk (1999) introduced compassionate interference, a form of good psychiatric care, which may help to prevail over the dichotomy of autonomy and coercion. Compassionate interference should not distinguish between competence and incompetence, but within daily care itself, and balancing the kind of accounting that better partners with providing care, and that of autonomy not being given a priori status, but that of a continuous accomplishment.

This study acknowledged that the subjects were cognitively compromised therefore recall may be problematic and associations identified may be challenging to interpret. Stringent selection criteria, such as those in receipt of homecare services, and those posting a score greater than 9 on the MMSE may have resulted in exclusion of some possible key informants, but do suggest that findings may be generalizable. Subjective preferences and concerns of moderately cognitively impaired participants, in the context of a lack of studies in the field, provided a unique perspective and added new knowledge.

This research study offered new insights and presented preliminary work to inform some important issues that underpin the nursing care needs, priorities and preferences of older adults with dementia and highlighted the importance of steeping choice and meaningful engagement even in the presence of lowered cognitive ability. Understanding the meaning and impact of their narrations will help to lay the ground work for new models of dementia care and place greater importance on management planning and outcome assessments. Ethical underpinning of degree of choice may require appropriate legislation to enable this broad, new field of nursing practice in collaboration with other disciplines.

Those who scored greater than 9 on the MMSE were well able to express themselves and engage fully in this research process. Serious consideration must however be given to including those with even greater levels of cognitive dysfunction (MMSE scores lower than 9) in research (Taylor, Demers, Vig, & Bornson, 2012) as the findings of these future research studies may provide the design to address identified gaps which may have implications for effective client outcomes. Factors which impact QoL_SR of those with dementia are varied and complex and understanding preferences and advocacy roles are crucial QoL outcome measures, underscoring the importance of including this group in research to a greater extent.

Footnotes

Acknowledgements

I am indebted to the remarkable, sage, and generous older adults, their SDMs and staff who agreed to participate in this study and shared their stories, experiences and hopes. Fleda Stewart (Mom) and Isabel Cockett (Grandma) older adults made a significant difference. Special thanks to Brenden Dufault, for statistical guidance.

Declaration of Conflicting Interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The views expressed in this article are the authors and not an official position of the institutions or funders. Previous submissions neither duplicate nor make this work redundant. The authors declare that there is no conflict of interest. Under the Personal Health Information Act and to ascertain confidentiality and privacy, data are being stored on CD and paper in locked filing system under lock and key for the next 10 years. Access may be gained from seeking permission of SDMs, Participants, Health Region and the associated Research Review boards.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported financially by the Canadian Gerontological Nurses Association; Manitoba Gerontological Nurses Association; College of Registered Nurses of Manitoba; and Winnipeg Health Region Nurses Fund.

Lois Stewart-Archer, RN, MN, PhD, CPMHN(C), the Regional Clinical Nurse Specialist of the Winnipeg Health Region, Rehabilitation & Geriatrics Programme is a research affiliate of the Manitoba Centre for Nursing and Health Research, University of Manitoba. She provides clinical education and supervision; develops policies/protocols, and practice guidelines, and consults regarding management and treatment of challenging issues related to older adults with mental health/psychiatric concerns. Dr Stewart-Archer enjoys working with these sages and strongly endorses maintenance of their dignity, spirit and independence.

Afrooz Afghani, PhD, MPH, completed her undergraduate degree in Biological Sciences at UC Irvine and her Master’s degree in Public Health at UCLA. She earned her PhD in a highly competitive five-year program of Biokinesiology at USC, where she also completed a two-year postdoctoral fellowship in Epidemiology at the Keck School of Medicine. Dr Afghani has first-authored numerous peer-reviewed articles in top-ranked medical journals. She has been an invited contributor of several book chapters and the editor of two books.

Chris Toye is Associate Professor, Older Persons’ Health Care, in the School of Nursing and Midwifery at Curtin University. She also works as a Research Consultant in the Centre for Nursing Research at Sir Charles Gairdner Hospital and is a Research Associate of the Wicking Dementia Research and Education Centre at the University of Tasmania. Chris represents Curtin University in its collaboration with the Queensland Dementia Collaborative Research Centre and has a particular interest in research addressing the care and support needs of people living with dementia.

Frank Gomez DrPH, MPH, School of Public Health, University of California, Los Angeles. He held several key positions with the Environmental Health, Department of Health Services, County of Los Angeles. He is the Program Director for the PhD in Health Sciences and a professor at Trident University International. He has also been a lecturer in Public Health at several other universities.

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Subjective quality of life of those 65 years and older experiencing dementia

Abstract

Background/Objectives

Design

Setting

Participants

Measurements

Results

Conclusion

Keywords

Introduction

Methods

Design

Cohort and sampling procedure

Measures

Procedures

Analyses

Rigour

Results

Subjective definitions of QoL.(What is QoL?)

Self-determination/Choice and QoLSR

What thing(s) would add most to your QoL?

Have you met your life’s goals?

Satisfaction of having met goals

Rationale for not meeting life’s goals

Family togetherness

Regrets experienced

Discussion

Life’s goals met

Self-determination

Footnotes

Acknowledgements

Declaration of Conflicting Interests

Funding

References

Self-determination/Choice and QoL_SR