Fig. 11.1
Number of publications indexed in Medline [PubMed] using quality of life and dementia as search terms, search date: 28.09.2016
There is no general accepted definition about what is meant by quality of life (QoL). This applies for the most part for QoL and also for dementia-specific QoL. A recently published article addresses the indiscriminate use of the terms quality of life, health-related quality of life (HRQoL), and health status (Karimi and Brazier 2016). In contrast to the indiscriminate use were the different definitions available for the concepts QoL and HRQoL.
An influential definition of QoL is the definition by the World Health Organization, which defines QoL as “individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (WHO 1995). This definition highlights the individuality, the culture-specific influence, and the breadth of the concept of QoL.
In contrast, HRQoL is defined, for example, as “how well a person functions in their life and his or her perceived well-being in physical, mental, and social domains of health” (Hays and Reeve 2010). In this definition, functioning refers to the individual ability to realize predefined activities, and well-being refers to individual subjective feelings (Karimi and Brazier 2016; Wilson and Cleary 1995). Based on this and similar definitions of HRQoL, Karimi and Brazier (2016) conclude that HRQoL is a particular type of health description, hence the World Health Organization defines health as “a state of complete physical, mental and social well-being, and not merely the absence of disease and infirmity” (WHO 2014). This means that HRQoL measurements reflect health in a wider sense (well-being and functioning) than clinical outcomes. However, this wide description targets health and not QoL. Therefore, HRQoL assesses a self-perceived health status and not QoL (Karimi and Brazier 2016). Based on this differentiation of both terms, this chapter focuses on the concept of quality of life for people with dementia. In cases where only research results were available for HRQoL of people with dementia, these will be highlighted in the text.
11.2 Models of Quality of Life for People with Dementia in Nursing Homes
Due to the indiscriminate use of the terms QoL and HRQoL and a lack of theoretical work targeting dementia-specific QoL, no consensus exists for the definition of QoL of people with dementia. One early and influential theoretical model describes dementia-specific QoL as consisting of objective (e.g., behavioral competence and environment) and subjective (e.g., perceived QoL and psychological well-being) components (called “sectors”) (Lawton 1991, 1994). Based on this theoretical approach, Jonker et al. developed a hierarchical model called “Lawton’s next step.” This model defines psychological well-being as the starting point and central indicator for dementia-specific QoL (Jonker et al. 2004), and the authors argue for the consideration of non-dementia-related domains of QoL, such as personal factors (e.g., religion, income, age), next to environmental characteristics and dementia-related domain. The development from Lawton’s first model to the model by Jonker and colleagues reflects the increasing importance of subjectivity for the concept of dementia-specific QoL. For both models it must be noted that they are based on the interpretation of selected evidence and experience of the authors and not on direct empirical data, a systematic review, or a concept analysis.
In contrast, a current key publication (O’Rourke et al. 2015) about factors which influence the QoL is based on self-expression of people with dementia in qualitative studies. The objective of this meta-synthesis was the identification of factors that affect QoL and not the concept of QoL in particular. Nevertheless, the results provide interesting information for the interpretation of QoL of people with dementia. In summary, the meta-synthesis identified four overlapping factors which affect QoL: relationships, sense of place, wellness perspective, and agency in life today. Connectedness is the link between all four factors. The results demonstrate the experience of connectedness (being purposeful or together) within one factor affecting QoL in a positive way. In addition, connectedness is associated with happiness. The feeling of disconnectedness within a factor (e.g., loneliness, worthlessness) negatively influences QoL. Moreover, it is associated with sadness (O’Rourke et al. 2015). In summary, this model underlines the relevance of the individual experience of people with dementia with their QoL. With connectedness as the central factor, the model focuses on how people with dementia and their individual environment (e.g., direct care, living arrangement) adapt to the consequences of dementia and general life changes, and not on their abilities (e.g., functional, cognitive). The results of this meta-synthesis were confirmed by the preliminary results of an ongoing meta-synthesis on factors influencing QoL of people with dementia (Dichter et al. 2016b).
A literature-based definition specifies dementia-specific QoL as “the multidimensional evaluation of the person-environment system of the individual, in terms of adaption to the perceived consequences of the dementia” (Ettema et al. 2005b). Based on this definition, the seven adaptive tasks of the adaption coping model (Dröes 1991) were interpreted as dementia-specific QoL dimensions: “(1) dealing with own disability, (2) developing an adequate care relationship with the staff, (3) preserving an emotional balance, (4) preserving a positive self-image, (5) preparing for an uncertain future, (6) developing and maintaining social relationships, and (7) dealing with the nursing home environment” (Ettema et al. 2007b). In addition, this model highlights the importance of psychosocial dimensions, which is supported by a review that showed ten psychosocial (e.g., attachment, social contact, spirituality) as well as three physical and practical domains (e.g., physical health, financial situation) of QoL judged by people with dementia (Scholzel-Dorenbos et al. 2010).
The focus on psychosocial domains and adaptation in contrast to abilities and functional domains allow the theoretical assumption that a high quality of life is also possible in the advanced stages of the dementia syndrome. This is an important perspective for affected persons and caregivers as well as researchers providing interventions to have the possibility of being effective with regard to QoL and other psychosocial outcomes. In addition, this perspective does not stigmatize the situation for people with dementia by an inevitable, continued decrease of quality of life during the course of their disease.
11.3 Measuring of Dementia-Specific Quality of Life in Nursing Homes
During the course of the theoretical developments, several dementia-specific QoL instruments have been developed, using self-ratings, proxy-ratings, or direct observations as the data sources (Ettema et al. 2005a; Scholzel-Dorenbos et al. 2007). Dementia-specific QoL measurements are preferable to generic measures, because they focus on domains which are important for people with dementia (Gräske et al. 2012). Their items are helpful to reflect the special situation of people with dementia and the components of interventions for the care of people with dementia. These advantages of dementia-specific measurements suggest a higher potential for the responsiveness to change that these measurements have.
11.3.1 Different Measurement Perspectives
QoL is a subjective, multidimensional, and independent construct (Rabins and Black 2007). Therefore, self-reports from people with dementia are acknowledged as the gold standard for measuring QoL in this population (Brod et al. 1999; Kane et al. 2003). Although one study indicates the reliable self-rating of people with dementia in advanced stages (Hoe et al. 2005), people with severe or very severe dementia are usually not able to rate their QoL when based on standardized questions (Fuh and Wang 2006; Huang et al. 2009). The cognitive decline among people with dementia is characterized by memory and concentration deficits and results in a decrease in decision-making and communicative abilities. For people with dementia, it will be problematic to understand questions in the right way and to recall relevant situations as a basis for their ratings (Streiner et al. 2015). Therefore, the reliability and validity of QoL self-reports has been questioned in the later stages of the disease (Ettema et al. 2005a), and the use of proxy measures is preferred in advanced dementia and for longitudinal QoL evaluation (Ettema et al. 2005b).
The proxy-assessment is typically applied by family members or caregivers in a close relationship to the person with dementia. However, proxy-rated QoL measurements are associated with numerous methodological difficulties. Scores are systematically lower than self-rated QoL values (Gräske et al. 2012; Huang et al. 2009). In the last years, numerous studies investigated the difference between self and proxy-ratings and possible influencing factors (Gräske et al. 2014). Proxy-ratings by family caregivers are influenced by the burden, depression, and noncognitive symptoms (Sands et al. 2004; Fuh and Wang 2006), whereas proxy-ratings by professional caregivers are influenced by attitudes (Winzelberg et al. 2005), life satisfaction, the assessment circumstances, and the challenging behavior of people with dementia living in nursing homes (Gräske et al. 2014).
The key problem is that with regard to the proxy perspective, the subjectivity of the QoL assessment is partly lost (Thorgrimsen et al. 2003). Following Pickard and Knight (2005), two different perspectives, the proxy-patient and the proxy-proxy perspective, have to be differentiated. Based on a proxy-proxy perspective, the family or professional caregiver assesses the QoL of a person with dementia from the proxy perspective (e.g., “How do you rate her/his QoL?”). This perspective differs more from a QoL self-rating than it does from a patient-proxy perspective. In the latter perspective, a proxy assesses the QoL of a person with dementia just as he/she thinks that the person with dementia would rate him or herself (e.g., “How do you think the resident would judge her/his QoL”). Ratings of QoL from a proxy perspective differ more from a self-rating than ratings of a proxy taken from the patient’s perspective (Pickard and Knight 2005). Figure 11.2 illustrates the different rating perspectives.
Fig. 11.2
Differentiation of proxy perspectives in the assessment of QoL based on Pickard and Knight (2005)
Next to self- and proxy-based measurements, a third category of measurements is based on direct observations. This means that a rater repeatedly assesses the behavior of a person with dementia for a defined period of time. Observed behavior includes, for example, interaction between people with dementia, interaction with the environment, activities and affect (Bowling et al. 2015). Observer ratings are preferred for people with late stage dementia. The major challenge is the often weak inter-rater reliability of observation-based QoL ratings (Dichter et al. 2016d).
11.3.2 Quality of Life Measurements for People with Dementia in Nursing Homes
Existing dementia-specific QoL measurements can be distinguished on the base of the mentioned perspectives. In addition, the measurements can be differentiated according to their feasibility, psychometric properties, stage of dementia, and the care setting in which the application of the measurement is possible, as well as the underlying QoL definition and domains (Ettema et al. 2005a; Ready and Ott 2003).
Hereinafter dementia-specific QoL and HRQoL measurements that can be applied in nursing homes are described. This list of measurements is based on a systematic review (Dichter et al. 2016d). Depending on the country, these measurements are applied often in research or care. We describe these QoL measurements, because in the literature all of them were reported under the term QoL measurements. Based on the definitions distinguished between QoL and HRQoL, we assign the measurements to one of these concepts.
The measurements will be described without a detailed description of their psychometric properties. For the respective psychometric properties of each measurement, several systematic reviews exist (Dichter et al. 2016d; Bowling et al. 2015).
11.3.2.1 AAIQOL (Activity and Affect Indicator Quality of Life)
The AAIQOL, which is also sometimes called “QoL-D”, consists of two subscales for the assessment of activity and affect as dimensions of HRQoL. The activity scale is derived from the Pleasant Events Schedule (Teri and Logsdon 1991) and the component scale is derived from the Affect Rating scale (Lawton et al. 1996). The activity subscale covers 15 activity items inside and outside the home, and the affect subscale contains six affect items (three reflecting positive affect and three negative affect). The frequency of activities and affect is rated over 1 or 2 weeks, respectively. The AAIQOL allows a proxy-rating using both subscales and a self-rating where only the activity subscale is applied. The application of the measurement is possible for mild to severe dementia (Albert et al. 1996). Only the original US version exists; there is no linguistically validated version for other countries available (Dichter et al. 2016d).
11.3.2.2 CBS-QoL (Cornell-Brown Scale for Quality of Life in Dementia)
The CBS-QoL consists of 19 bipolar items covering four dimensions of HRQoL: positive affect, negative affect, satisfaction, and physical complaints. All 19 items are summarized in a total score. The HRQoL rating is applied by a clinician after semi-structured interviews with the respective person with dementia and a caregiver. The time frame for the HRQoL rating is the previous month (Ready et al. 2002). The clinical rating is based on joint interviews between a clinician, the person with dementia, and a caregiver and results in a questionable feasibility for the application of the CBS scale in the nursing home practice. The CBS-QoL was developed for people with mild to moderate dementia. It is available in its original US version (Ready et al. 2002) and a Spanish version (Lucas-Carrasco et al. 2013).
11.3.2.3 DEMQOL and DEMQOL-Proxy (Dementia Quality of Life Questionnaire)
The DEMQOL consists of 28 items for the self-rating version and 31 for the proxy version (Smith et al. 2005). Both measurements can be applied for the measurement of HRQoL for people with mild to moderate dementia (proxy version: mild to severe dementia). The self-rating version allows the assessment of the HRQoL domains daily activities, memory positive emotion, and negative emotion. With the proxy version, the domains functioning and emotion can be assessed. Both versions are applied during an interview. The proxy version was developed for the assessment by caregivers. Both DEMQOL versions were originally developed in England (Smith et al. 2005). Both versions were translated to German (Berwig et al. 2009) and Spanish (Lucas-Carrasco et al. 2010).
11.3.2.4 H.I.L.DE (Heidelberg Instrument for the Assessment of Quality of Life in Dementia)
H.I.L.DE. is a QoL measurement for people with mild to severe dementia in nursing homes. It is mainly based on proxy-rating; however, for some items, self-rating or observations are required (Becker et al. 2005, 2011). H.I.L.DE. contains 48 QoL indicators which allow the assessment of the following domains: medical care and perceived pain, living environment, activities, social relations, emotions, and life satisfaction. An advantage of H.I.L.DE. is the presence of competence groups (mild dementia, moderate dementia, severe dementia with somatic disabilities, severe dementia with Behavioral and Psychological Symptoms of Dementia (BPSD)), which facilitate the interpretation of H.I.L.DE. results. Unfortunately, QoL rating based on H.I.L.DE. is very time-consuming, thus the application is not recommended in research. For the application in clinical practice, shorter measurement versions are under development. Apart from the original German version, no further version exists for any other country.
11.3.2.5 QoL-AD (Quality of Life in Alzheimer’s Disease)
The QoL-AD is a 13-item scale for the assessment of HRQoL in people with Alzheimer’s disease (Hylla et al. 2016). The QoL-AD has two versions; one is completed by self-rating and one by the caregiver (proxy-rated). When both self and proxy versions are used, a weighted composite score is calculated by giving greater weight (2:1) to the self-rating in relation to the proxy-rating. The QoL-AD results in a score that ranges from 13 to 52, with higher scores indicating a higher QoL (Logsdon et al. 1999, 2002). The QoL-AD items cover the following HRQoL domains: physical health, mental health, social and functional abilities, social contacts, financial situation, and overall QoL. The scale was primarily developed for the HRQoL ratings of people living in their own home with mild to severe dementia. In addition, a QoL-AD nursing home version is available (see below). But the original 13-item version is also applied in nursing homes.
The QoL-AD is the most often used dementia-specific HRQoL measurement in research (Bowling et al. 2015), and the self-rating version demonstrated almost satisfactory psychometric properties (Dichter et al. 2016d; Bowling et al. 2015). In contrast, the proxy version is also applied in a number of studies, but we have only insufficient information on its psychometric properties (Dichter et al. 2016d). In addition, it is unclear whether the items have to be rated from a proxy-proxy or patient-proxy perspective.
There are translated versions of the QoL-AD available for Great Britain (Selai et al. 2001b), Brazil (Novelli et al. 2005), Taiwan (Fuh and Wang 2006), Japan (Matsui et al. 2006), Mandarin (Lin Kiat Yap et al. 2008) and Cantonese China (Chan et al. 2011), France (Wolak et al. 2009), Spain (Gomez-Gallego et al. 2014), Turkey (Akpinar and Kücükgüclü 2012), and Portugal (Barrios et al. 2013).
11.3.2.6 QoL-AD NH (Quality of Life in Alzheimer’s Disease Nursing Home Version)
The Qol-AD nursing home version is based on the original 13-item version, which is also used for people with mild to severe dementia (Logsdon et al. 1999). For the adaption to the nursing home setting, two of the original 13 items were deleted, four items were added, and the wording of three items was changed (Edelman et al. 2005). As in the case of the original version, there is a self and a proxy version available for the QoL-AD NH. Based on the 15 items, the scale’ total score ranges between 15 and 60, with higher scores indicating a higher QoL. In addition to the US version, a German translation of the measurement is obtainable (Dichter et al. 2016e).
11.3.2.7 QOLAS (Quality of Life Assessment Schedule)
The QOLAS is a dementia-specific measurement for the individualized QoL rating of people with mild to moderate dementia (Selai et al. 2001a). The QOLAS has five domains: physical, psychological, social relationships/family, activities, and cognitive-related QoL. The QOLAS is applied during a semi-structured interview where people with dementia have to rate their current score and their target score on a scale from 0 to 5. Apart from the original British version, no other version is available. Currently, a linguistically validated German version is under development (Dichter et al. 2013).
11.3.2.8 ADRQL (Alzheimer Disease-Related Quality of Life)
The ADRQL is a proxy-rated HRQoL measurement for people with mild to severe dementia (Rabins et al. 1999). It is available in several versions with 40 to 48 items. These items cover the HRQoL dimensions social interaction, awareness of self, feelings and mood, enjoyment of activities, and response to surroundings. The proxy-ratings are applied by family caregivers or professional caregivers. These ratings are based on observations during the previous 2 weeks. In addition to the original US version, translated and adapted versions are available for Switzerland (Menzi-Kuhn 2006) and Japan (Yamamoto et al. 2000). The Japanese version is called AD-HRQL-J or QLDJ. This Japanese version consists of 20 translated ADRQL and four new developed items.
11.3.2.9 DCM (Dementia Care Mapping)
DCM is a dementia-specific QoL measurement that is based on structured proxy observations (Kitwood and Bredin 1992). By means of observing different behaviors, the dimensions activity, well-being, and quality of care were assessed. The observation procedure differs depending on the research questions or the reasoning in clinical practice. In general, observations take place at 5 min intervals over 4 or 5 h. The domain’s activity and quality of care result in frequency and percentage scores. For the domain well-being, a six response option scale results in a range between +5 (well-being) and −5 (ill-being). In addition to the English language version, several translations, e.g., to German, Dutch, and Norwegian, exist.
11.3.2.10 OQOLD (Observing Quality of Life in Dementia) and OQOLDA (Observed Quality of Life in Dementia Advanced)
The OQOLD version for mild to moderate and the OQOLDA version for severe dementia are observation-based proxy QoL measurements that were developed in the USA (Edelman et al. 2007). With both measurements, six items on verbal cues and indicators of engagement as well as affect (OQOLD) or subtle signs of positive and negative affect and engagement (OQOLDA) were observed. To facilitate the most accurate observation, a professional caregiver with a close relationship to the person with dementia is most appropriate. The observation ratings were based on a seven-point scale ranging from −3 (extremely pleasant experience) to +3 (extremely unpleasant experience). No version in a language other than the US version exists.
11.3.2.11 QoL-D (Quality of Life for Dementia)
The proxy-based QoL-D was developed in Japan (Terada et al. 2002). It consists of 31 items which cover the six QoL domains positive affect, negative affect and actions, ability of communication, restlessness, attachment with others, and spontaneity and activity. All items are to be answered on a four-point scale based on the present judgment of the proxy-rater. No version in a language other than Japanese is available (Dichter et al. 2016d).
11.3.2.12 QUALID (Quality of Life in Late-Stage Dementia Scale)
The QUALID allows QoL in particular for the assessments of institutionalized people with severe or very severe dementia (Weiner et al. 2000). The measurement is based on Lawton’s model (Lawton 1991) and covers positive and negative emotions, discomfort and satisfaction. The 11 items were based on proxy observations during the previous week. The five-point response scale for each item results in a total score from 11 to 55, lower scores indicate a higher QoL. In addition to the original US version (Weiner et al. 2000), translated versions are available for Sweden (Falk et al. 2007), Spain (Garre-Olmo et al. 2010), Norway (Mjorud et al. 2014), and Germany (Brandenburg 2013).
11.3.2.13 QUALIDEM
QUALIDEM is a proxy-based measurement that consists of two consecutive versions (Ettema et al. 2007a, 2007b). The 37-item version for people with mild to severe dementia covers nine QoL domains: care relationship, positive affect, negative affect, restless tense behavior, positive self-image, social relations, social isolation, feeling at home, and having something to do. Thus, the QUALIDEM is the only dementia-specific instrument that enables assessment of the QoL domains of “care relationship” and “feeling at home.” Both domains are important for people with dementia who live in nursing homes. The 18-item version for people with very severe dementia covers the same QoL domains with the expectations of positive self-image, feeling at home, and having something to do. All items are rated based on the observations of the previous 2 weeks by one or more professional caregivers with a close relationship to the person with dementia. Since 2016, a definition and complementary items are available for each QUALIDEM item. Based on this, the QoL rating by one professional caregiver is possible (Dichter et al. 2016a, 2016c). Without the application of the item definitions and examples, the collaborative QoL rating by two or more caregivers is recommended (Ettema et al. 2007b).
The developers of the measurement advise the calculation of subscale scores and not a measurement total score. This will result in a QoL-profile which shows more information than only one total score. Nevertheless, it can sometimes be necessary to calculate an overall score for statistical or methodological reasons. In such cases, the authors recommend calculating an overall QUALIDEM score with additional computations for each subscale. This approach is demonstrated in several studies (Dichter et al. 2015; Verbeek et al. 2010).
In addition to the original Dutch version, translations to English and German are available. In a recent study, the German version was applied with a seven-response scale demonstrating a sufficient item distribution and inter-rater reliability (Dichter et al. 2016c).
11.3.2.14 Vienna List
The Vienna List allows HRQoL proxy-ratings for people with severe dementia (Porzsolt et al. 2004). The measurement consists of 40 items which reflect the dimensions communication, negative affect, bodily contact, aggression, and mobility. These items were answered with a five-point response scale based on the present situation. As a result, a score for each HRQoL is calculated. The original version was developed in Austria, and no other version is available.
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