The course of neuropsychiatric symptoms in community-dwelling patients with dementia: a systematic review

Borsje, Petra; Wetzels, Roland B; Pot, Anne Margriet; Koopmans, Raymond T.C.M.

doi:10.1017/s1041610214002282

Cited by 79 publications

(68 citation statements)

References 52 publications

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“…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. Our findings add support to recommendations from studies carried out in other counties for a focused structured assessment of BPSD before deciding on treatment, even in mild dementia, 294 and timely recognition with adequate professional support.…”

Section: Implications For Researchmentioning

confidence: 99%

“…Our findings add support to recommendations from studies carried out in other counties for a focused structured assessment of BPSD before deciding on treatment, even in mild dementia, 294 and timely recognition with adequate professional support. 300 Future applied research studies such as ours will need careful longitudinal evaluation of specialised individualised interventions for home-dwelling people with clinically significant CB, early on following diagnosis of dementia. Given the gaps in knowledge about the management of CB in family settings which have been noted in an independent review of progress of the National Dementia Strategy of 2009 (pp.…”

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: Implications For Researchmentioning

confidence: 99%

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

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Section: Introductionmentioning

confidence: 99%

“…A systematic review of studies on the course of NPS in community-dwelling patients with dementia found a cumulative prevalence of any neuropsychiatric symptom between 49% and 95% [3]. Delusions, agitation, aberrant motor behavior and apathy are the most common NPS [3]. Neuropsychiatric symptoms not only affect the quality of life of the patient [4], but also result in a higher burden of informal caregivers and a lower quality of their lives [4–6].…”

Section: Introductionmentioning

confidence: 99%

The effectiveness of creating an online life story book on persons with early dementia and their informal caregivers: a protocol of a randomized controlled trial

et al. 2017

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BackgroundDementia has a high burden for patients, informal caregivers and society. Given changes in care systems, more persons with dementia will live longer at home. However, living at home (with dementia) with a good quality of life is not easy to achieve. Dementia is often accompanied by neuropsychiatric symptoms like apathy, agitation, depression, and anxiety, which have a negative impact on quality of life. Whereas cognitive deterioration can hardly be influenced, it is possible to reduce neuropsychiatric symptoms. As autobiographical memories remain intact for a relatively long time in dementia, reminiscence interventions can promote feelings of pleasure and trust. The Online Life Story Book (OLSB) allows to digitally share memories (stories, pictures, video or audio fragments). The main objective is to study the effects of the OLSB on neuropsychiatric symptoms. The study has four secondary objectives: 1) to study the effectiveness of the intervention on the burden and quality of life of the primary informal caregiver; 2) to provide a preliminary health-economic evaluation; 3) to study the (time to) nursing home admittance as a longer term effect; 4) to provide a process evaluation.Methods and designA randomized controlled trial with individual randomization to one of two conditions is conducted: 1) intervention “Online Life Story Book”; 2) control condition (care as usual). Participants are persons with early dementia and their primary caregivers. In the intervention OLSB, a trained volunteer guides the participants through the process of putting together a timeline of their lives during 5 meetings within a period of 8-10 weeks. To assess the effects of the intervention on the primary outcome, neuropsychiatric symptoms, the Neuropsychiatric Inventory (NPI) will be assessed at three time points: before the intervention (baseline, T0), 3 months (T1) and 6 months (T2) post baseline.DiscussionWhen proven effective, the Online Life Story Book can be a valuable addition to the existing provision of care for persons with dementia and their informal caregivers.Trial registrationThis study has been approved by the Twente Medical Ethics Committee under the file number p16-04 (Dutch Trial Register: NTR5939, date of registration: 14 March 2016).

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“…1 Comorbid neuropsychiatric symptoms (NPS), such as depression, anxiety, apathy, sleep disturbance, agitation, hallucinations and delusions, are extremely common (> 90%) in patients with all NCD subtypes and are usually more prominent in those in advanced stages. 2,3 An underlying medical condition, unmet needs and environmental factors often contribute to the emergence of NPS, which underlines the importance of ruling them out first. 4 Nonpharmacological interventions remain the mainstay of treatment for nonurgent NPS, and guidelines suggest limiting pharmacological interventions to severe, dangerous, or highly distressing symptoms.…”

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confidence: 99%

Pharmacological management of neuropsychiatric symptoms in patients with major neurocognitive disorders

Elie

Rej

2018

jpn

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The course of neuropsychiatric symptoms in community-dwelling patients with dementia: a systematic review

Cited by 79 publications

References 52 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

The effectiveness of creating an online life story book on persons with early dementia and their informal caregivers: a protocol of a randomized controlled trial

Pharmacological management of neuropsychiatric symptoms in patients with major neurocognitive disorders

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