The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort

Henderson, Catherine; Knapp, Martín; Martyr, Anthony; Gamble, Laura D.; Nelis, Sharon M.; Quinn, Catherine; Pentecost, Claire; Collins, Rachel; Wu, Yu‐Tzu; Jones, Ian Rees; Chapot, Victor; Pickett, James; Jones, Roy; Matthews, Fiona; Morris, Robin G.; Rusted, Jennifer; Thom, Jeanette M.; Clare, Linda

doi:10.3233/jad-215117

Cited by 12 publications

(14 citation statements)

References 53 publications

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“…Confirmation with medical records was not possible to determine accuracy of this information. Issues around accuracy of self‐reporting have been discussed in a previous paper, 54 with literature indicating that under‐reporting is more common than over‐reporting when compared to medical records 55,56 . The self‐reported number of symptoms in these cases are low, and any impact of self‐reporting on results is unclear.…”

Section: Discussionmentioning

confidence: 99%

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Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort

Alexander

Martyr

Clare

2022

Int J Geriat Psychiatry

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Objectives Awareness of difficulties shown by people with dementia is known to vary, but few studies have explored changes in awareness over time. Investigating this could further the understanding of surrounding concepts and reasons for impaired awareness. Recognising emerging or diminishing awareness could facilitate discussions about diagnosis and appropriate post‐diagnostic support. Methods Using longitudinal data from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort, awareness in community‐dwelling people with mild‐to‐moderate dementia was assessed at three timepoints over 2 years. A validated checklist was used to evaluate awareness of difficulties associated with dementia. We examined changes in awareness for people with low awareness at baseline, and used case‐matching to describe differences in characteristics between people who gained awareness, and those who continued with low awareness. Results At baseline, 83 people from a sample of 917 showed low awareness. The majority of those remaining in the study at later timepoints had gained awareness, some as late as four or more years after diagnosis. Case‐matched comparisons revealed few distinguishing characteristics: cases with stable low awareness had similar or better cognitive and functional ability than those who gained and retained awareness at 12 and 24 months, but may have had more co‐morbidities. Conclusions Self‐reported awareness of difficulties can change and may increase over time in people with mild‐to‐moderate dementia. There may be individual reasons for ongoing low awareness, not explained by cognitive or functional ability. This challenges the view that a single record of low awareness represents a fixed disease‐related symptom, and highlights the complex, individual and dynamic nature of awareness.

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Section: Discussionmentioning

confidence: 99%

“…Confirmation with medical records was not possible to determine accuracy of this information. Issues around accuracy of self-reporting have been discussed in a previous paper, 54 with…”

Section: Limitationsmentioning

confidence: 99%

Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort

Alexander

Martyr

Clare

2022

Int J Geriat Psychiatry

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“…The present systematic review aimed to provide an updated and comprehensive overview of the efficacy of non-pharmacological treatments in patients with LBD. Although LBD is the second most common neurodegenerative dementia after Alzheimer’s disease and causes a substantial social impact [6, 40], definitive clinical guidelines are still lacking. Previous systematic reviews on non-pharmacological interventions in people with LBD reported PT interventions [8] or other various evidence-based or non-evidence-based interventions, such as occupational therapy, psychoeducational therapy, music therapy [9, 10].…”

Section: Discussionmentioning

confidence: 99%

Non-Pharmacological Treatments in Lewy Body Disease: A Systematic Review

Evangelisti¹,

Siniscalco²,

Lodi³

et al. 2023

Dement Geriatr Cogn Disord

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Introduction: Lewy body disease (LBD) is the second most common neurodegenerative disorder in patients older than 65 years. LBD is characterized by heterogeneous symptoms like fluctuation in attention, visual hallucinations, Parkinsonism, and REM sleep behaviour disorders. Considering the relevant social impact of the disease, identifying effective non-pharmacological treatments is becoming a priority. The aim of this systematic review was to provide an up-to-date literature review of the most effective non-pharmacological treatments in patients with LBD, focussing on evidence-based interventions. Methods: Following PRISMA criteria, we carried out a systematic search through three databases (PubMed, Cochrane Libraries, and PEDro) including physical therapy (PT), cognitive rehabilitation (CR), light therapy (LT), transcranial direct current stimulation (tDCS), transcranial magnetic stimulation (TMS), electroconvulsive therapy (ECT), deep brain stimulation (DBS). All studies were qualitatively assessed using standardized tools (CARE and EPHPP). Results: We obtained a total of 1,220 studies of which 23 original articles met eligibility criteria for inclusion. The total number of LBD patients included was 231; mean age was 69.98, predominantly men (68%). Some PT studies highlighted improvements in motor deficits. CR produced significant improvements in mood, cognition, and patient’s quality of life and satisfaction. LT outlined a partial trend of improvements in mood and sleep quality. DBS, ECT, and TMS showed some partial improvements mainly on neuropsychiatric symptoms, whereas tDCS provided partial improvements in attention. Conclusion: This review highlights the efficacy of some evidence-based rehabilitation studies in LBD; however, further randomized controlled trials with larger samples are needed to provide definitive recommendations.

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“…This may be because people with PDD and DLB have poorer QoL and ‘living well’ scores – as do their carers – compared to people with AD, VaD and FTD 32 . Movement disabilities associated with PDD and DLB may also be more likely to require specialised symptom management than difficulties associated with AD, therefore resulting in more frequent provision of support services 33 . Moreover, people with PDD may have received support from specialist Parkinson's disease services prior to developing dementia, which may improve subsequent receipt of support compared to people with AD, for whom support may be more limited.…”

Section: Discussionmentioning

confidence: 99%

Limited receipt of support services among people with mild‐to‐moderate dementia: Findings from the IDEAL cohort

Horik

Collins

Martyr

et al. 2022

Int J Geriat Psychiatry

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Background: Global initiatives that promote public health responses to dementia have resulted in numerous countries developing new national policies. Current policy guidelines in England, for example, recommend that people diagnosed with mild-to-moderate dementia receive information and psychosocial interventions to improve their ability to 'live well'. However, it remains unclear to what extent these recommendations are being achieved.Methods: Self-reported information from 1537 people living with dementia and informant-reported information from 1277 carers of people living with dementia was used to quantify receipt of community-based dementia support services, including health and social care services provided by statutory or voluntary-sector organisations, in Britain from 2014 to 2016. Demographic factors associated with differences in receipt of support services were also investigated to identify particularly vulnerable groups of people living with dementia.Results: Both self-and informant reports suggested that approximately 50% of people living with dementia received support services for dementia. Receipt of support services was lower among people living with dementia who are older, female, and have fewer educational qualifications. Receipt of support services also differed according to diagnosis and carer status, but was unrelated to marital status.Conclusions: Limited receipt of dementia support services among people living with dementia in Britain provides a baseline to assess the efficacy of current policy guidelines regarding provision of information and support. Targeted efforts to facilitate receipt of support services among the particularly vulnerable groups identified in the current study could improve the efficacy of dementia support services both in Britain and internationally, and should inform policy development.

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The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort

Cited by 12 publications

References 53 publications

Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort

Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort

Non-Pharmacological Treatments in Lewy Body Disease: A Systematic Review

Limited receipt of support services among people with mild‐to‐moderate dementia: Findings from the IDEAL cohort

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