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PSYCHOGERIATRICS 2014; 14: 235–240
doi:10.1111/psyg.12062
ORIGINAL ARTICLE
Quality of life in nursing home residents with advanced dementia: a 2-year follow-up Erik OUDMAN1,2 and Bertus VEURINK3
1
Slingedael Korsakoff Centre, Rotterdam, Helmholtz Institute, Department of Experimental Psychology, Utrecht University, Utrecht, and 3 Faculty of Economics and Business (FEB), University of Amsterdam, Amsterdam, The Netherlands 2
Correspondence: Mr Erik Oudman MSc, Slingedael Korsakoff Centre, Slinge 901, 3086 EZ Rotterdam, The Netherlands. Email: e.oudman@ leliezorggroep.nl Received 29 March 2014; revision received 9 July 2014; accepted 5 August 2014.
Key words: dementia, longitudinal, nursing, psychogeriatrics, quality of life, well-being.
Abstract Background: Quality of life (QOL) in dementia has become increasingly recognized as an important clinical and policy concern, but little is known about the progression of QOL in patients with advanced dementia on psychogeriatric units of nursing homes. Therefore, the primary goal of the current study was to assess the evolution of QOL in advanced dementia patients on a psychogeriatric unit. Methods: The QUALIDEM scale, a reliable and validated QOL instrument developed for patients with advanced dementia in residential settings who are unable to self-report, was assessed at baseline and 2 years later. Of the 75 patients with advanced dementia included at baseline, 32 patients participated at follow-up. Results: Average QUALIDEM QOL scores did show a trend towards a significant improvement over a 2-year period. For 61.8% of the subjects at follow-up, the average scores improved. On the subscales that assessed ‘feeling at home’, ‘social isolation’ and ‘negative affect’, improvement was significant. Conclusions: Although it could be expected that QOL would decline over time in advanced dementia patients, results of the current study suggest that QOL is stable or improves despite the global cognitive deterioration, particularly in the more advanced stages of dementia. QOL is a distinctive domain of disease severity that should receive more attention in the advanced stages of dementia.
INTRODUCTION Dementia is a syndrome that causes devastating problems for patients, their families and society. It is a debilitating disease associated with progressive cognitive decline leading to death.1 There is still no definitive cure for most patients, so particular attention has been paid to quality of life (QOL) in dementia in the past decade.2 QOL is often used as a term for the general well-being of individuals. In the context of dementia, QOL has been conceptualized in multiple ways and often includes domains of social life, environmental life and emotional states.3 At present, patients with dementia live 7–10 years after diagnosis and often spend multiple years under nursing home care.1 A recent review suggested that factors that contribute to QOL in dementia are cognition (self-rated QOL), © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
mood (self-rated and proxy-rated QOL) and dependency (proxy-rated QOL).4 To date, there are five studies that have investigated the evolution of QOL in patients with dementia. Importantly, no available study included only patients from a psychogeriatric ward who were unable to self-report. The first longitudinal study of QOL in dementia was conducted by Lyketsos et al.5 In their study, 47 residents with dementia showed a small decline in QOL ratings over 2 years as measured with the Alzheimer’s Disease Related Quality of Life (ADRQL) scale.6 The ADRQL was specifically designed to assess social interactions, feeling and mood, and response to surroundings. The ADRQL was assessed twice by interviewing a direct caregiver of each resident at baseline and at 2-year follow-up for both patients in assisted 235
E. Oudman and B. Veurink
living facilities and in nursing homes. In a later study conducted by Funaki et al.,7 there was an increase in QOL over a 3-month period as assessed with the Japanese Quality of Life Questionnaire in residents with dementia who were able to self-report.8 A positive increase in QOL was associated with the number of housekeeping activities that the patients performed. Moreover, Selwood et al. reported no significant change in QOL in institutionalized residents with dementia, with the Dementia Quality of Life Scale (n = 24) and the Quality of Life Alzheimer’s Disease Scale (n = 29).9,10 This study also only included residents who were able to self-report. Furthermore, Missotten et al. performed a 2-year follow-up of QOL in 127 residents with dementia who were living at home or in a long-term care institution with three assessments of the ADRQL.11 Here, QOL did not develop in a strictly linear manner, with an annual variation of the global ADRQL score. The global ADRQL score over the 2-year period did not significantly change; however specifically for the mild-tomoderate stages of dementia, patients’ physical and social environment was critical for their QOL. Finally, Hoe et al. applied the Quality of Life Alzheimer’s Disease Scale in a sample of 190 residents with dementia in care homes with diverse levels of care.12 In their study, there was no change in general QOL, but individual changes became apparent in threequarters of the sample over a 20-week period. A reduction in residents’ QOL was predicted by lower baseline depression and anxiety symptoms, higher baseline QOL ratings, and an increase in depressive symptoms and cognitive deterioration at follow-up. To conclude, the first five longitudinal studies revealed varying results: a decrease, stabilization or increase of QOL over a 2-year period. Importantly, only two studies involved severely impaired dementia patients who resided in a long-term care facility, although their samples consisted of both patients in assisted living and skilled nursing facilities.5,12 There are currently no longitudinal studies on QOL in skilled psychogeriatric facilities alone. Therefore, the primary aim of the present study was to objectify the evolution of QOL over a 2-year period in patients who were diagnosed with advanced dementia (Reisberg stadium 5 and 6) and resided on a psychogeriatric ward in a nursing home at baseline. Moreover, we wanted to examine the evolution of specific characteristics of QOL over time in those patients. 236
METHODS Measurements The QUALIDEM is a reliable and well validated QOL instrument specifically developed for patients with mild-to-advanced dementia in residential settings. It is an appropriate instrument for evaluating QOL in patients with cognitive disorders who are not able to self-report.13–18 The scores of the QUALIDEM are specifically relevant to the study of QOL in advanced dementia. This is in contrast to current studies, which have been restricted to residents with dementia who are able to self-report or have included a mix of residents with advanced dementia in nursing homes and patients in assisted living.5,9,11 The multidimensional behaviour observation scale contains 37 items allocated to nine subscales: ‘care relationship’ (seven items, Cronbach’s alpha 0.83), ‘positive affect’ (six items, Cronbach’s alpha 0.89), ‘negative affect’ (three items, Cronbach’s alpha 0.71), ‘restlessness tense behaviour’ (three items, Cronbach’s alpha 0.74), ‘positive self-image’ (three items, Cronbach’s alpha 0.64), ‘social relations’ (six items, Cronbach’s alpha 0.80), ‘social isolation’ (three items, Cronbach’s alpha 0.59), ‘feeling at home’ (four items, Cronbach’s alpha 0.73), and ‘having something to do’ (two items, Cronbach’s alpha 0.62).13–16 For very severely demented patients, a short alternative version of the QUALIDEM was developed.17 This version contains 21 items allocated to six subscales. Because QOL in end-stage dementia is still not wellunderstood, the current study included no residents with end-stage dementia (Fig. 1). Sample and setting Study participants at baseline were a consecutive series of 75 residents with dementia living in a nursing home. Diagnosis of dementia was taken from a diagnosis mentioned in the medical record. The Reisberg Global Deterioration Scale (GDS) has been developed for assessment of primary degenerative dementia and delineation of its stages; it uses a scale of 1 to 7, with 1 representing no cognitive impairment and 7 representing very severe cognitive decline.19 All residents with dementia fulfilled the criteria for stage 5 or higher according to the GDS. In addition to diagnosis, standard socioeconomic information was obtained. The follow-up study was conducted approximately 24 months after the baseline assessment. The residents in the original study who were still living in their © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Quality of life in advanced dementia
Figure 1 Chart that shows the flow of participants in the current study.
original long-term care facilities were reassessed. Of the initial 75 residents, 36 were still living in their original nursing home. Of the remainder, four residents had been discharged to a different nursing home and 35 had died. For one resident, no follow-up data were available. Three residents were excluded based on the severity of the dementia and the inability to assess QOL in the end-stage of dementia with the regular QUALIDEM. Therefore, 32 residents with dementia were enrolled in the follow-up (Fig. 1). This study was approved by the local committee (Slingedael, Rotterdam, the Netherlands), and it conforms to the provisions of the Declaration of Helsinki (1996). The study was conducted in accordance guidelines for research conducted by the Central Dutch Committee on Research Involving Human Subjects (The Hague and Rotterdam, the Netherlands). Procedure At the start of the project, all members of the care staff were instructed on scoring the QUALIDEM based on the scale’s instruction guide. To get them acquainted © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
with the scoring system, all nurses had the opportunity to discuss the scoring method with a psychologist, a social worker or a nurse practitioner. After observing the participant for 2 weeks, the care staff scored the 37 items of the QUALIDEM on a 4-point scale (never, seldom, sometimes, and often), with two nurses using one score sheet to maintain a higher inter-observer reliability. The score on each subscale was linearly transformed from 0 to 100, such that higher scores reflect a better QOL.18 After the entire care staff was introduced to the QUALIDEM, the nurses who were primarily responsible for the subjects were recruited to participate in the research project. Nurses who were enrolled in the study were asked to fill out the QUALIDEM at baseline and at follow-up. The scores on all subscales were than averaged to reflect a general parameter for QOL. The scores were assessed at baseline and approximately 24 months after the baseline assessment. Statistical analysis The current study reports descriptive findings regarding QUALIDEM scores at baseline and 24-month 237
E. Oudman and B. Veurink
follow-up (Table 1). Differences between the averages and subscales at baseline and follow-up were tested using within-subjects t-tests. We then estimated QUALIDEM domain change scores, by subtracting the baseline score from the follow-up score. Negative numbers indicate a decline in QUALIDEM scores. Distributions of these change scores are displayed in box plots. For statistical analysis, a two-tailed P-value less than 0.05 was considered statistically significant. Analysis was performed using SPSS version 17.0 (SPSS Inc., Chicago, IL, USA).
RESULTS Baseline characteristics The residents with dementia at baseline assessment had a mean 1 SD age of 79.0 1 10.0 years, while the average age at follow-up was 77.1 1 10.1 years. At baseline, 65.3% of participants were woman; 59.4% were women at follow-up. In the follow-up group, 28.1% had been diagnosed with Alzheimer’s dementia, 12.5% had vascular dementia, 9.4% had frontotemporal dementia, and the remaining 50.0% had dementia of a mixed aetiology. Baseline QUALIDEM scores were compared between the 32 residents at follow-up and the original group of participants, and no statistically significant differences were found. The GDS 19 indicated that 28 residents had a GDS-6 during the follow-up and 4 residents had a GDS-5.
Quality of life There was a mean increase of 3.4% 1 10.8% on the average scale. Average QUALIDEM scores improved for 19 participants (59.4%). Change in QUALIDEM is explored in Table 1, which is displayed in mean 1 SEM scores per domain. Table 1 also shows the results of the comparison between the two time points with repeated measures t-tests. Scores were better at follow-up in some of the domains, namely ‘feeling at home’ (+12.3%), ‘social isolation’ (+11.2%) and ‘negative affect’ (+10.1%). The mean QUALIDEM score (+3.4%) and the score on the subscale ‘care relationship’ (+6.1%) yielded a trend towards a significant increase. Five subscales did not show a significant change at follow-up compared to the baseline. 238
DISCUSSION The primary aim of the present study was to objectify the evolution of QOL in dementia over a 2-year period in residents diagnosed with advanced dementia who lived in a psychogeriatric ward of a nursing home. A secondary goal of the study was to examine the evolution of specific characteristics of QOL over time in those residents with dementia. There was a trend towards an increase in overall QOL in advanced dementia over a 2-year period. However, the overall change in QOL was very small (3.0%). The clinical significance of an increase of this magnitude is uncertain. QUALIDEM scores improved for 59.4% of the participants. The strongest increase was seen in the ‘feeling at home’, ‘social isolation’, and ‘negative affect’ domains. Results of the current study suggest that QOL is stable or improves despite the global cognitive deterioration specifically in the more advanced stages of dementia. This relative stability suggests that QOL is a distinctive domain of disease severity. Knowing this might comfort family members in accepting the dementia process. In the current study, the strongest increase was seen over a 2-year period in the ‘feeling at home’ domain. This finding is in line with the study by Missotten et al., which suggested that the physical and social environment of patients is most relevant in the mild-to-moderate stages of dementia and less relevant in the most advanced stages.11 A possible explanation for this finding is that patients in more advanced stages of dementia are unable to discriminate the location where they reside from their original homes. The social isolation of patients decreased over time. Importantly, the questions that intended to index social isolation in dementia in the QUALIDEM indicate that those in the advanced stage engage in shouting and openly rejecting other people and are rejected by others. There is a possibility that patients with advanced dementia do show a restricted pattern of expressive behaviour resulting in a decreased social isolation. A different possibility is that residents get more acquainted to their novel situation such that both ‘feeling at home’ and ‘social isolation’ do improve. The results of the current study are in line with two earlier studies that found evidence for moderate QOL in advanced dementia.17 The results of the earlier studies are extended by the current finding in that a positive change of specific aspects in QOL is still © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
All scores are reported as mean 1 SEM. †Intraclass correlation in the original sample.15,16 AD, Alzheimer’s dementia; FTD, frontotemporal dementia; Mixed, dementia of mixed aetiology; VD, vascular dementia.
t(31) = 1.8, P = 0.085 t(31) = 1.8, P = 0.088 t(31) = −0.2, P = 0.832 t(31) = 2.1, P = 0.042 t(31) = 0.3, P = 0.734 t(31) = 0.6, P = 0.541 t(31) = −1.6, P = 0.117 t(31) = 3.0, P = 0.006 t(31) = 3.5, P = 0.001 t(31) = −1.6, P = 0.117 +3.4 +6.1 −0.6 +10.1 +2.1 +2.8 −5.2 +11.2 +12.3 −7.8 +3.3 +5.3 +1.7 +7.6 −6.3 +3.5 −2.8 +10.4 +9.4 +1.0 +15.6 +3.2 +20.4 +29.6 +44.4 −3.7 +7.4 +33.3 0.0 +5.6 +1.2 +4.8 −9.8 +16.7 −8.3 +11.1 −9.8 +8.3 +22.9 −25.0 +0.5 +9.0 −8.0 +4.9 +7.4 0.0 −11.7 +6.2 +16.7 −20.4 63.3 1 2.1 71.1 1 3.1 65.5 1 4.0 78.5 1 4.9 43.1 1 5.2 84.7 1 40 45.7 1 4.1 74.7 1 3.5 89.6 1 2.6 16.7 1 3.9 59.9 1 2.3 65.0 1 3.6 66.1 1 4.0 68.4 1 5.2 41.0 1 5.5 81.9 1 3.9 50.9 1 4.3 63.5 1 4.3 77.3 1 5.0 24.5 1 4.7 QUALIDEM Care relationship Positive affect Negative affect Restless tense behaviour Positive self-mage Social relationships Social isolation Feeling at home Having something to do
0.88 0.76 0.82 0.81 0.66 0.84 0.85 0.72 0.78
Follow-up score (n = 32) Baseline score (n = 32) Intraclass correlation coefficient†
Table 1 Observed quality of life at baseline and 2-year follow-up
AD difference (n = 9)
VD difference (n = 4)
FTD difference (n = 3)
Mixed difference (n = 16)
Mean difference (n = 32)
Mean t-test (n = 32)
Quality of life in advanced dementia
© 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
possible in advanced dementia. The evolution of QOL in advanced dementia has not been described before. Three earlier studies suggested a stable or small decrease in QOL in dementia over a 2-year period,5,9,11 but all three studies included also residents who were not admitted to a psychogeriatric ward of a nursing home. A recent review on QOL in residents with dementia living in a long-term care facility contradicted the popular belief that QOL essentially declines in patients with dementia when they are placed in a nursing home.20 Measuring the QOL of nursing home residents with dementia who cannot be interviewed is a major challenge, but the QUALIDEM is a validated and reliable QOL instrument specifically developed for elderly residents with dementia in nursing homes. The QUALIDEM is currently the most appropriate instrument for evaluating QOL in residents with very severe cognitive disorders who are not able to self-report.16,17 The current study found evidence for a change in QOL over a 2-year period; this is relevant for the QUALIDEM instrument in that it is able to detect change in QOL over time. This study has some limitations. Because the QUALIDEM is based on reports by care staff members instead of self-reports, this may add subjectivity to the observed scores. The problem is that measures of general well-being are impossible for the patient to indicate, especially for patients with advanced dementia. It has, however, been suggested that the QUALIDEM is currently the best available measure of QOL for patients who are not able to self-report.13–16 The 37-item QUALIDEM is not suitable for the most advanced forms of dementia (GDS-7). Therefore, we excluded three patients in the current study. It would be of significant relevance to prospectively evaluate QOL in the most advanced stages of dementia. The current study was not suitable for this exploration because the number of residents with GDS-7 in the current sample was relatively small. Because the current article is a starting point for examining the evolution of QOL in advanced dementia, we encourage more research into this field with supplementary measurements of QOL, well-being and neuropsychiatric measurements. Conclusion The primary goal of the current study was to assess the evolution of QOL in advanced dementia patients on a psychogeriatric unit. Although it could be expected that a large decrease in QOL would be 239
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found over time, results of the current study indicate that, specifically in the more advanced stages of dementia, QOL is stable or improves despite the global cognitive deterioration and is therefore likely to be a distinctive domain of disease severity. Based on this finding, we recommend that more effort should be taken to increase the QOL in advanced stages of dementia. Additionally, more studies should be conducted to investigate progression of QOL in advanced dementia.
ACKNOWLEDGEMENTS The content of this manuscript has not been published elsewhere. Both authors contributed significantly and are in agreement with the content of the manuscript. The authors have no conflicts of interest to disclose.
REFERENCES 1 Rabins PV, Lyketsos CG, Steel C. Practical Dementia Care. New York: Oxford University Press, 2006. 2 Whitehouse PJ, Patterson MB, Sami SA. Quality of life in dementia: ten years later. Alzheimer Dis Assoc Disord 2005; 17: 199–200. 3 Logsdon RG, Albert SM. Assessing quality of life in Alzheimer’s disease: conceptual and methodological issues. J Ment Health Aging 1999; 5: 3–6. 4 Beerens HC, Zwakhalen SM, Verbeek H et al. Factors associated with quality of life of people with dementia in long-term care facilities: a systematic review. Int J Nurs Stud 2013; 50: 1259–1270. 5 Lyketsos CG, Gonzales-Salvador T, Chin JJ et al. A follow-up study of change in quality of life among persons with dementia residing in a long-term care facility. Int J Geriatr Psychiatry 2003; 18: 275–281. 6 Rabins PV, Kasper JD, Kleinman L et al. Concepts and methods in the development of the ADRQL: an instrument for assessing health-related quality of life in persons with Alzheimer disease. J Ment Health Aging 1999; 5: 33–48.
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7 Funaki Y, Kaneko F, Okamura H. Study on factors associated with changes in quality of life of demented elderly persons in group homes. Scand J Occup Ther 2005; 12: 4–9. 8 Terada S, Ishizu H, Fujisawa Y et al. Development and evaluation of a health-related quality of life questionnaire for the elderly with dementia in Japan. Int J Geriatr Psychiatry 2002; 17: 851– 858. 9 Selwood A, Thorgrimsen L, Orrell M. Quality of life in dementia–a one-year follow-up study. Int J Geriatr Psychiatry 2005; 20: 232–237. 10 Logsdon RG, Gibbons LE, McCurry SM et al. Quality of life in Alzheimer’s disease: patient and caregiver reports. J Ment Health Aging 1999; 5: 21–32. 11 Missotten P, Ylieff M, Di Notte D et al. Quality of life in dementia: a 2-year follow-up study. Int J Geriatr Psychiatry 2007; 22: 1201–1207. 12 Hoe J, Hancock G, Livingston G. Changes in the quality of life of people with dementia living in care homes. Alzheimer Dis Assoc Disord 2009; 23: 285–290. 13 Ettema TP, Dröes RM, de Lange J et al. A review of quality of life instruments used in dementia. Qual Life Res 2005; 14: 675–686. 14 Ettema TP, Dröes RM, de Lange J et al. QUALIDEM: development and evaluation of a dementia specific quality of life instrument. Scalability, reliability and internal structure. Int J Geriatr Psychiatry 2007; 22: 549–556. 15 Schölzel-Dorenbos CJ, Ettema TP, Bos J et al. Evaluating the outcome of interventions on quality of life in dementia: selection of the appropriate scale. Int J Geriatr Psychiatry 2007; 22: 511– 519. 16 Ettema TP, Dröes RM, de Lange J et al. QUALIDEM: development and evaluation of a dementia specific quality of life instrument-validation. Int J Geriatr Psychiatry 2007; 22: 424– 430. 17 Koopmans RT, van der Molen M, Raats M et al. Neuropsychiatric symptoms and quality of life in patients in the final phase of dementia. Int J Geriatr Psychiatry 2009; 24: 25–32. 18 Oudman E, Zwart E. Quality of life of patients with Korsakoff’s syndrome and patients with dementia: a cross-sectional study. J Am Med Dir Assoc 2012; 13: 778–781. 19 Reisberg B, Ferris SH, de Leon MJ et al. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry 1982; 139: 1136–1139. 20 Moyle W, Murfield JE, Griffith SG et al. Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts. J Adv Nurs 2012; 68: 2237– 2246.
© 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
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PSYCHOGERIATRICS 2014; 14: 235–240
doi:10.1111/psyg.12062
ORIGINAL ARTICLE
Quality of life in nursing home residents with advanced dementia: a 2-year follow-up Erik OUDMAN1,2 and Bertus VEURINK3
1
Slingedael Korsakoff Centre, Rotterdam, Helmholtz Institute, Department of Experimental Psychology, Utrecht University, Utrecht, and 3 Faculty of Economics and Business (FEB), University of Amsterdam, Amsterdam, The Netherlands 2
Correspondence: Mr Erik Oudman MSc, Slingedael Korsakoff Centre, Slinge 901, 3086 EZ Rotterdam, The Netherlands. Email: e.oudman@ leliezorggroep.nl Received 29 March 2014; revision received 9 July 2014; accepted 5 August 2014.
Key words: dementia, longitudinal, nursing, psychogeriatrics, quality of life, well-being.
Abstract Background: Quality of life (QOL) in dementia has become increasingly recognized as an important clinical and policy concern, but little is known about the progression of QOL in patients with advanced dementia on psychogeriatric units of nursing homes. Therefore, the primary goal of the current study was to assess the evolution of QOL in advanced dementia patients on a psychogeriatric unit. Methods: The QUALIDEM scale, a reliable and validated QOL instrument developed for patients with advanced dementia in residential settings who are unable to self-report, was assessed at baseline and 2 years later. Of the 75 patients with advanced dementia included at baseline, 32 patients participated at follow-up. Results: Average QUALIDEM QOL scores did show a trend towards a significant improvement over a 2-year period. For 61.8% of the subjects at follow-up, the average scores improved. On the subscales that assessed ‘feeling at home’, ‘social isolation’ and ‘negative affect’, improvement was significant. Conclusions: Although it could be expected that QOL would decline over time in advanced dementia patients, results of the current study suggest that QOL is stable or improves despite the global cognitive deterioration, particularly in the more advanced stages of dementia. QOL is a distinctive domain of disease severity that should receive more attention in the advanced stages of dementia.
INTRODUCTION Dementia is a syndrome that causes devastating problems for patients, their families and society. It is a debilitating disease associated with progressive cognitive decline leading to death.1 There is still no definitive cure for most patients, so particular attention has been paid to quality of life (QOL) in dementia in the past decade.2 QOL is often used as a term for the general well-being of individuals. In the context of dementia, QOL has been conceptualized in multiple ways and often includes domains of social life, environmental life and emotional states.3 At present, patients with dementia live 7–10 years after diagnosis and often spend multiple years under nursing home care.1 A recent review suggested that factors that contribute to QOL in dementia are cognition (self-rated QOL), © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
mood (self-rated and proxy-rated QOL) and dependency (proxy-rated QOL).4 To date, there are five studies that have investigated the evolution of QOL in patients with dementia. Importantly, no available study included only patients from a psychogeriatric ward who were unable to self-report. The first longitudinal study of QOL in dementia was conducted by Lyketsos et al.5 In their study, 47 residents with dementia showed a small decline in QOL ratings over 2 years as measured with the Alzheimer’s Disease Related Quality of Life (ADRQL) scale.6 The ADRQL was specifically designed to assess social interactions, feeling and mood, and response to surroundings. The ADRQL was assessed twice by interviewing a direct caregiver of each resident at baseline and at 2-year follow-up for both patients in assisted 235
E. Oudman and B. Veurink
living facilities and in nursing homes. In a later study conducted by Funaki et al.,7 there was an increase in QOL over a 3-month period as assessed with the Japanese Quality of Life Questionnaire in residents with dementia who were able to self-report.8 A positive increase in QOL was associated with the number of housekeeping activities that the patients performed. Moreover, Selwood et al. reported no significant change in QOL in institutionalized residents with dementia, with the Dementia Quality of Life Scale (n = 24) and the Quality of Life Alzheimer’s Disease Scale (n = 29).9,10 This study also only included residents who were able to self-report. Furthermore, Missotten et al. performed a 2-year follow-up of QOL in 127 residents with dementia who were living at home or in a long-term care institution with three assessments of the ADRQL.11 Here, QOL did not develop in a strictly linear manner, with an annual variation of the global ADRQL score. The global ADRQL score over the 2-year period did not significantly change; however specifically for the mild-tomoderate stages of dementia, patients’ physical and social environment was critical for their QOL. Finally, Hoe et al. applied the Quality of Life Alzheimer’s Disease Scale in a sample of 190 residents with dementia in care homes with diverse levels of care.12 In their study, there was no change in general QOL, but individual changes became apparent in threequarters of the sample over a 20-week period. A reduction in residents’ QOL was predicted by lower baseline depression and anxiety symptoms, higher baseline QOL ratings, and an increase in depressive symptoms and cognitive deterioration at follow-up. To conclude, the first five longitudinal studies revealed varying results: a decrease, stabilization or increase of QOL over a 2-year period. Importantly, only two studies involved severely impaired dementia patients who resided in a long-term care facility, although their samples consisted of both patients in assisted living and skilled nursing facilities.5,12 There are currently no longitudinal studies on QOL in skilled psychogeriatric facilities alone. Therefore, the primary aim of the present study was to objectify the evolution of QOL over a 2-year period in patients who were diagnosed with advanced dementia (Reisberg stadium 5 and 6) and resided on a psychogeriatric ward in a nursing home at baseline. Moreover, we wanted to examine the evolution of specific characteristics of QOL over time in those patients. 236
METHODS Measurements The QUALIDEM is a reliable and well validated QOL instrument specifically developed for patients with mild-to-advanced dementia in residential settings. It is an appropriate instrument for evaluating QOL in patients with cognitive disorders who are not able to self-report.13–18 The scores of the QUALIDEM are specifically relevant to the study of QOL in advanced dementia. This is in contrast to current studies, which have been restricted to residents with dementia who are able to self-report or have included a mix of residents with advanced dementia in nursing homes and patients in assisted living.5,9,11 The multidimensional behaviour observation scale contains 37 items allocated to nine subscales: ‘care relationship’ (seven items, Cronbach’s alpha 0.83), ‘positive affect’ (six items, Cronbach’s alpha 0.89), ‘negative affect’ (three items, Cronbach’s alpha 0.71), ‘restlessness tense behaviour’ (three items, Cronbach’s alpha 0.74), ‘positive self-image’ (three items, Cronbach’s alpha 0.64), ‘social relations’ (six items, Cronbach’s alpha 0.80), ‘social isolation’ (three items, Cronbach’s alpha 0.59), ‘feeling at home’ (four items, Cronbach’s alpha 0.73), and ‘having something to do’ (two items, Cronbach’s alpha 0.62).13–16 For very severely demented patients, a short alternative version of the QUALIDEM was developed.17 This version contains 21 items allocated to six subscales. Because QOL in end-stage dementia is still not wellunderstood, the current study included no residents with end-stage dementia (Fig. 1). Sample and setting Study participants at baseline were a consecutive series of 75 residents with dementia living in a nursing home. Diagnosis of dementia was taken from a diagnosis mentioned in the medical record. The Reisberg Global Deterioration Scale (GDS) has been developed for assessment of primary degenerative dementia and delineation of its stages; it uses a scale of 1 to 7, with 1 representing no cognitive impairment and 7 representing very severe cognitive decline.19 All residents with dementia fulfilled the criteria for stage 5 or higher according to the GDS. In addition to diagnosis, standard socioeconomic information was obtained. The follow-up study was conducted approximately 24 months after the baseline assessment. The residents in the original study who were still living in their © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Quality of life in advanced dementia
Figure 1 Chart that shows the flow of participants in the current study.
original long-term care facilities were reassessed. Of the initial 75 residents, 36 were still living in their original nursing home. Of the remainder, four residents had been discharged to a different nursing home and 35 had died. For one resident, no follow-up data were available. Three residents were excluded based on the severity of the dementia and the inability to assess QOL in the end-stage of dementia with the regular QUALIDEM. Therefore, 32 residents with dementia were enrolled in the follow-up (Fig. 1). This study was approved by the local committee (Slingedael, Rotterdam, the Netherlands), and it conforms to the provisions of the Declaration of Helsinki (1996). The study was conducted in accordance guidelines for research conducted by the Central Dutch Committee on Research Involving Human Subjects (The Hague and Rotterdam, the Netherlands). Procedure At the start of the project, all members of the care staff were instructed on scoring the QUALIDEM based on the scale’s instruction guide. To get them acquainted © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
with the scoring system, all nurses had the opportunity to discuss the scoring method with a psychologist, a social worker or a nurse practitioner. After observing the participant for 2 weeks, the care staff scored the 37 items of the QUALIDEM on a 4-point scale (never, seldom, sometimes, and often), with two nurses using one score sheet to maintain a higher inter-observer reliability. The score on each subscale was linearly transformed from 0 to 100, such that higher scores reflect a better QOL.18 After the entire care staff was introduced to the QUALIDEM, the nurses who were primarily responsible for the subjects were recruited to participate in the research project. Nurses who were enrolled in the study were asked to fill out the QUALIDEM at baseline and at follow-up. The scores on all subscales were than averaged to reflect a general parameter for QOL. The scores were assessed at baseline and approximately 24 months after the baseline assessment. Statistical analysis The current study reports descriptive findings regarding QUALIDEM scores at baseline and 24-month 237
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follow-up (Table 1). Differences between the averages and subscales at baseline and follow-up were tested using within-subjects t-tests. We then estimated QUALIDEM domain change scores, by subtracting the baseline score from the follow-up score. Negative numbers indicate a decline in QUALIDEM scores. Distributions of these change scores are displayed in box plots. For statistical analysis, a two-tailed P-value less than 0.05 was considered statistically significant. Analysis was performed using SPSS version 17.0 (SPSS Inc., Chicago, IL, USA).
RESULTS Baseline characteristics The residents with dementia at baseline assessment had a mean 1 SD age of 79.0 1 10.0 years, while the average age at follow-up was 77.1 1 10.1 years. At baseline, 65.3% of participants were woman; 59.4% were women at follow-up. In the follow-up group, 28.1% had been diagnosed with Alzheimer’s dementia, 12.5% had vascular dementia, 9.4% had frontotemporal dementia, and the remaining 50.0% had dementia of a mixed aetiology. Baseline QUALIDEM scores were compared between the 32 residents at follow-up and the original group of participants, and no statistically significant differences were found. The GDS 19 indicated that 28 residents had a GDS-6 during the follow-up and 4 residents had a GDS-5.
Quality of life There was a mean increase of 3.4% 1 10.8% on the average scale. Average QUALIDEM scores improved for 19 participants (59.4%). Change in QUALIDEM is explored in Table 1, which is displayed in mean 1 SEM scores per domain. Table 1 also shows the results of the comparison between the two time points with repeated measures t-tests. Scores were better at follow-up in some of the domains, namely ‘feeling at home’ (+12.3%), ‘social isolation’ (+11.2%) and ‘negative affect’ (+10.1%). The mean QUALIDEM score (+3.4%) and the score on the subscale ‘care relationship’ (+6.1%) yielded a trend towards a significant increase. Five subscales did not show a significant change at follow-up compared to the baseline. 238
DISCUSSION The primary aim of the present study was to objectify the evolution of QOL in dementia over a 2-year period in residents diagnosed with advanced dementia who lived in a psychogeriatric ward of a nursing home. A secondary goal of the study was to examine the evolution of specific characteristics of QOL over time in those residents with dementia. There was a trend towards an increase in overall QOL in advanced dementia over a 2-year period. However, the overall change in QOL was very small (3.0%). The clinical significance of an increase of this magnitude is uncertain. QUALIDEM scores improved for 59.4% of the participants. The strongest increase was seen in the ‘feeling at home’, ‘social isolation’, and ‘negative affect’ domains. Results of the current study suggest that QOL is stable or improves despite the global cognitive deterioration specifically in the more advanced stages of dementia. This relative stability suggests that QOL is a distinctive domain of disease severity. Knowing this might comfort family members in accepting the dementia process. In the current study, the strongest increase was seen over a 2-year period in the ‘feeling at home’ domain. This finding is in line with the study by Missotten et al., which suggested that the physical and social environment of patients is most relevant in the mild-to-moderate stages of dementia and less relevant in the most advanced stages.11 A possible explanation for this finding is that patients in more advanced stages of dementia are unable to discriminate the location where they reside from their original homes. The social isolation of patients decreased over time. Importantly, the questions that intended to index social isolation in dementia in the QUALIDEM indicate that those in the advanced stage engage in shouting and openly rejecting other people and are rejected by others. There is a possibility that patients with advanced dementia do show a restricted pattern of expressive behaviour resulting in a decreased social isolation. A different possibility is that residents get more acquainted to their novel situation such that both ‘feeling at home’ and ‘social isolation’ do improve. The results of the current study are in line with two earlier studies that found evidence for moderate QOL in advanced dementia.17 The results of the earlier studies are extended by the current finding in that a positive change of specific aspects in QOL is still © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
All scores are reported as mean 1 SEM. †Intraclass correlation in the original sample.15,16 AD, Alzheimer’s dementia; FTD, frontotemporal dementia; Mixed, dementia of mixed aetiology; VD, vascular dementia.
t(31) = 1.8, P = 0.085 t(31) = 1.8, P = 0.088 t(31) = −0.2, P = 0.832 t(31) = 2.1, P = 0.042 t(31) = 0.3, P = 0.734 t(31) = 0.6, P = 0.541 t(31) = −1.6, P = 0.117 t(31) = 3.0, P = 0.006 t(31) = 3.5, P = 0.001 t(31) = −1.6, P = 0.117 +3.4 +6.1 −0.6 +10.1 +2.1 +2.8 −5.2 +11.2 +12.3 −7.8 +3.3 +5.3 +1.7 +7.6 −6.3 +3.5 −2.8 +10.4 +9.4 +1.0 +15.6 +3.2 +20.4 +29.6 +44.4 −3.7 +7.4 +33.3 0.0 +5.6 +1.2 +4.8 −9.8 +16.7 −8.3 +11.1 −9.8 +8.3 +22.9 −25.0 +0.5 +9.0 −8.0 +4.9 +7.4 0.0 −11.7 +6.2 +16.7 −20.4 63.3 1 2.1 71.1 1 3.1 65.5 1 4.0 78.5 1 4.9 43.1 1 5.2 84.7 1 40 45.7 1 4.1 74.7 1 3.5 89.6 1 2.6 16.7 1 3.9 59.9 1 2.3 65.0 1 3.6 66.1 1 4.0 68.4 1 5.2 41.0 1 5.5 81.9 1 3.9 50.9 1 4.3 63.5 1 4.3 77.3 1 5.0 24.5 1 4.7 QUALIDEM Care relationship Positive affect Negative affect Restless tense behaviour Positive self-mage Social relationships Social isolation Feeling at home Having something to do
0.88 0.76 0.82 0.81 0.66 0.84 0.85 0.72 0.78
Follow-up score (n = 32) Baseline score (n = 32) Intraclass correlation coefficient†
Table 1 Observed quality of life at baseline and 2-year follow-up
AD difference (n = 9)
VD difference (n = 4)
FTD difference (n = 3)
Mixed difference (n = 16)
Mean difference (n = 32)
Mean t-test (n = 32)
Quality of life in advanced dementia
© 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
possible in advanced dementia. The evolution of QOL in advanced dementia has not been described before. Three earlier studies suggested a stable or small decrease in QOL in dementia over a 2-year period,5,9,11 but all three studies included also residents who were not admitted to a psychogeriatric ward of a nursing home. A recent review on QOL in residents with dementia living in a long-term care facility contradicted the popular belief that QOL essentially declines in patients with dementia when they are placed in a nursing home.20 Measuring the QOL of nursing home residents with dementia who cannot be interviewed is a major challenge, but the QUALIDEM is a validated and reliable QOL instrument specifically developed for elderly residents with dementia in nursing homes. The QUALIDEM is currently the most appropriate instrument for evaluating QOL in residents with very severe cognitive disorders who are not able to self-report.16,17 The current study found evidence for a change in QOL over a 2-year period; this is relevant for the QUALIDEM instrument in that it is able to detect change in QOL over time. This study has some limitations. Because the QUALIDEM is based on reports by care staff members instead of self-reports, this may add subjectivity to the observed scores. The problem is that measures of general well-being are impossible for the patient to indicate, especially for patients with advanced dementia. It has, however, been suggested that the QUALIDEM is currently the best available measure of QOL for patients who are not able to self-report.13–16 The 37-item QUALIDEM is not suitable for the most advanced forms of dementia (GDS-7). Therefore, we excluded three patients in the current study. It would be of significant relevance to prospectively evaluate QOL in the most advanced stages of dementia. The current study was not suitable for this exploration because the number of residents with GDS-7 in the current sample was relatively small. Because the current article is a starting point for examining the evolution of QOL in advanced dementia, we encourage more research into this field with supplementary measurements of QOL, well-being and neuropsychiatric measurements. Conclusion The primary goal of the current study was to assess the evolution of QOL in advanced dementia patients on a psychogeriatric unit. Although it could be expected that a large decrease in QOL would be 239
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found over time, results of the current study indicate that, specifically in the more advanced stages of dementia, QOL is stable or improves despite the global cognitive deterioration and is therefore likely to be a distinctive domain of disease severity. Based on this finding, we recommend that more effort should be taken to increase the QOL in advanced stages of dementia. Additionally, more studies should be conducted to investigate progression of QOL in advanced dementia.
ACKNOWLEDGEMENTS The content of this manuscript has not been published elsewhere. Both authors contributed significantly and are in agreement with the content of the manuscript. The authors have no conflicts of interest to disclose.
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