Neuropsychiatric symptoms and Quality of Life in patients with very mild and mild Alzheimer's disease

Karttunen, Kristiina; Karppi, Pertti; Hiltunen, Asta; Vanhanen, Matti; Välimäki, Tarja; Martikainen, Janne; Valtonen, Hannu; Sivenius, Juhani; Soininen, Hilkka; Hartikainen, Sirpa; Suhonen, Jaana; Pirttilä, Tuula

doi:10.1002/gps.2550

Cited by 201 publications

(203 citation statements)

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“…High levels of BPSD among people with mild dementia have also been noted by others. 294 In our cohort, the overall monthly health-and social-care costs were £2828 (mean annual cost £33,941; see Table 65, with all informal care costed at minimum wage); this is comparable to the costs quoted in the Alzheimer's Society 2014 update 235 for all disease severity levels of £29,298. The authors 235 also noted costs of £25,723 for mild, £42,841 for moderate and £55,197 for severe dementia.…”

Section: Health Economicssupporting

confidence: 54%

“…This is consistent with findings from Finland, noting BPSD in 76.5% of people with mild Alzheimer's disease. 294 BPSD in community-dwelling people with dementia can be severe throughout the course of the condition. 300,301 Longitudinal studies are needed to improve our understanding of the characteristics of people with mild dementia with CB, changes in BPSD over time and what interventions might moderate CB to reduce distress for them, their families and others.…”

Section: Implications For Researchmentioning

confidence: 99%

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Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families

Moniz–Cook

Hart

Woods

et al. 2017

Programme Grants Appl Res

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BackgroundDementia with challenging behaviour (CB) causes significant distress for caregivers and the person with dementia. It is associated with breakdown of care at home and disruption in care homes. Challenge Demcare aimed to assist care home staff and mental health practitioners who support families at home to respond effectively to CB.ObjectivesTo study the management of CB in care homes (ResCare) and in family care (FamCare). Following a conceptual overview, two systematic reviews and scrutiny of clinical guidelines, we (1) developed and tested a computerised intervention; (2) conducted a cluster randomised trial (CRT) of the intervention for dementia with CB in care homes; (3) conducted a process evaluation of implementation of the intervention; and (4) conducted a longitudinal observational cohort study of the management of people with dementia with CB living at home, and their carers.Review methodsCochrane review of randomised controlled trials; systematic meta-ethnographic review of quantitative and qualitative studies.DesignResCare – survey, CRT, process evaluation and stakeholder consultations. FamCare – survey, longitudinal cohort study, participatory development design process and stakeholder consultations. Comparative examination of baseline levels of CB in the ResCare trial and the FamCare study participants.SettingsResCare – 63 care homes in Yorkshire. FamCare – 33 community mental health teams for older people (CMHTsOP) in seven NHS organisations across England.ParticipantsResCare – 2386 residents and 861 staff screened for eligibility; 555 residents with dementia and CB; 277 ‘other’ residents; 632 care staff; and 92 staff champions. FamCare – every new referral (n = 5360) reviewed for eligibility; 157 patients with dementia and CB, with their carer; and 26 mental health practitioners. Stakeholder consultations – initial workshops with 83 practitioners and managers from participating organisations; and 70 additional stakeholders using eight group discussions and nine individual interviews.InterventionAn online application for case-specific action plans to reduce CB in dementia, consisting of e-learning and bespoke decision support care home and family care e-tools.Main outcome measuresResCare – survey with the Challenging Behaviour Scale; measurement of CB with the Neuropsychiatric Inventory (NPI) and medications taken from prescriptions; implementation with thematic views from participants and stakeholders. FamCare – case identification from all referrals to CMHTsOP; measurement of CB with the Revised Memory and Behaviour Problems Checklist and NPI; medications taken from prescriptions; and thematic views from stakeholders. Costs of care calculated for both settings. Comparison of the ResCare trial and FamCare study participants used the NPI, Clinical Dementia Rating and prescribed medications.ResultsResCare – training with group discussion and decision support for individualised interventions did not change practice enough to have an impact on CB in dementia. Worksite e-learning opportunities were not readily taken up by care home staff. Smaller homes with a less hierarchical management appear more ready than others to engage in innovation. FamCare – home-dwelling people with dementia and CB are referred to specialist NHS services, but treatment over 6 months, averaging nine contacts per family, had no overall impact on CB. Over 60% of people with CB had mild dementia. Families bear the majority of the care costs of dementia with CB. A care gap in the delivery of post-diagnostic help for families supporting relatives with dementia and significant CB at home has emerged. Higher levels of CB were recorded in family settings; and prescribing practices were suboptimal in both care home and family settings.LimitationsFunctionality of the software was unreliable, resulting in delays. This compromised the feasibility studies and undermined delivery of the intervention in care homes. A planned FamCare CRT could not proceed because of insufficient referrals.ConclusionsA Cochrane review of individualised functional analysis-based interventions suggests that these show promise, although delivery requires a trained dementia care workforce. Like many staff training interventions, our interactive e-learning course was well received by staff when delivered in groups with facilitated discussion. Our e-learning and decision support e-tool intervention in care homes, in its current form, without ongoing review of implementation of recommended action plans, is not effective at reducing CB when compared with usual care. This may also be true for staff training in general. A shift in priorities from early diagnosis to early recognition of dementia with clinically significant CB could bridge the emerging gap and inequities of care to families. Formalised service improvements in the NHS, to co-ordinate such interventions, may stimulate better opportunities for practice models and pathways. Separate services for care homes and family care may enhance the efficiency of delivery and the quality of research on implementation into routine care.Future workThere is scope for extending functional analysis-based interventions with communication and interaction training for carers. Our clinical workbooks, video material of real-life episodes of CB and process evaluation tool resources require further testing. There is an urgent need for evaluation of interventions for home-dwelling people with dementia with clinically significant CB, delivered by trained dementia practitioners. Realist evaluation designs may illuminate how the intervention might work, and for whom, within varying service contexts.Trial registrationCurrent Controlled Trials ISRCTN02553381 (the ResCare trial) and ISRCTN58876649 (the FamCare study).FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 5, No. 15. See the NIHR Journals Library website for further project information.

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Section: Health Economicssupporting

confidence: 54%

Section: Implications For Researchmentioning

confidence: 99%

Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families

Moniz–Cook

Hart

Woods

et al. 2017

Programme Grants Appl Res

View full text Add to dashboard Cite

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“…The association between greater depression and lower scores on self-perceived QoL has been widely reported in longitudinal and cross-sectional studies of community samples [5,6,8,11,18,[34][35][36][37][38] and of patients attending day centers [39] or living in residential care [2,4,40]. Furthermore, the results obtained have been similar despite the variety of instruments used to assess depression: Cornell Scale for Depression in Dementia (CSDD) [2,4], Center for Epidemiologic Studies-Depression Scale (CES-D) [6], Hospital Anxiety and Depression Scale (HADS) [8], NPI-Depression [5,11,37], Geriatric Depression Scale (GDS) [18,36,38,39], Hamilton Depression Scale (HRSD) [35], and the Beck Depression Inventory (BDI) [34].…”

Section: Factors Associated With Qol In the Sample As A Wholementioning

confidence: 95%

“…Furthermore, the results obtained have been similar despite the variety of instruments used to assess depression: Cornell Scale for Depression in Dementia (CSDD) [2,4], Center for Epidemiologic Studies-Depression Scale (CES-D) [6], Hospital Anxiety and Depression Scale (HADS) [8], NPI-Depression [5,11,37], Geriatric Depression Scale (GDS) [18,36,38,39], Hamilton Depression Scale (HRSD) [35], and the Beck Depression Inventory (BDI) [34].…”

Section: Factors Associated With Qol In the Sample As A Wholementioning

confidence: 98%

Self-Perceived Quality of Life Among Patients with Alzheimer’s Disease: Two Longitudinal Models of Analysis

Conde-Sala

Turró‐Garriga

Portellano-Ortiz

et al. 2016

JAD

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Abstract.The objective was to analyze the factors that influence self-perceived quality of life (QoL) in patients with Alzheimer's disease (AD), contrasting two different longitudinal models. A total of 127 patients were followed up over 24 months. The instruments applied were: Quality of Life in Alzheimer's Disease scale (QoL-AD), Geriatric Depression Scale-15, Anosognosia Questionnaire-Dementia, Disability Assessment in Dementia, Neuropsychiatric Inventory, and the Mini-Mental State Examination. Two models for grouping patients were tested: 1) Baseline score on the QoL-AD (QoLBaseline), and 2) Difference in QoL-AD score between baseline and follow-up (QoL-Change). Generalized estimating equations were used to analyze longitudinal data, and multinomial regression analyses were performed. Over the follow-up period the QoL-Baseline model showed greater variability between groups (Wald χ 2 = 172.3, p < 0.001) than did the QoLChange model (Wald χ 2 = 1.7, p = 0.427). In the QoL-Baseline model the predictive factors were greater depression (odds ratio [OR] = 1.20; 95% CI: 1.00-1.45) and lower functional ability (OR = 0.92; 95% CI: 0.85-0.99) for the Low QoL group (< 33 QoL-AD), and less depression (OR = 0.68; 95% CI: 0.52-0.88), more anosognosia (OR = 1.07; 95% CI: 1.01-1.13), and fewer neuropsychiatric symptoms (OR = 0.95; 95% CI: 0.91-0.99) for the High-QoL group (>37 QoL-AD). The model based on baseline scores (QoL-Baseline) was better than the QoL-Change model in terms of identifying trajectories and predictors of QoL in AD.

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“…They adversely affect the patients' quality of life (Karttunen et al, 2011), cause distress to caregivers (Cummings and McPherson, 2001), increase the risk for nursing home placement (Tun et al, 2007), and increase the cost of care (Jönsson et al, 2006). The presence of BPSD has also been reported to predict the progression to severe dementia in AD.…”

Section: Introductionmentioning

confidence: 99%

Treatment effects ofGinkgo bilobaextract EGb 761® on the spectrum of behavioral and psychological symptoms of dementia: meta-analysis of randomized controlled trials

Savaskan

Mueller

Hoerr

et al. 2017

Int. Psychogeriatr.

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Neuropsychiatric symptoms and Quality of Life in patients with very mild and mild Alzheimer's disease

Cited by 201 publications

References 65 publications

Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families

Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families

Self-Perceived Quality of Life Among Patients with Alzheimer’s Disease: Two Longitudinal Models of Analysis

Treatment effects ofGinkgo bilobaextract EGb 761® on the spectrum of behavioral and psychological symptoms of dementia: meta-analysis of randomized controlled trials

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