Situating support for people living with rarer forms of dementia

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Abstract

Background

Awareness of a multitude of diseases that can cause neurodegenerative decline and their unique symptom profiles in the dementia care and support sectors remains limited. Obtaining an accurate diagnosis and post-diagnostic care and support is a challenge for many people and their families. As part of a larger study examining multi-component forms of support for people living with rarer dementias, the aim of this present study was to examine how rare dementia was situated within the complex social groupings, their organization and embedded discursive constructions that broadly form dementia care and support delivery.

Methods

Adopting a situational analysis approach, we undertook an examination of public documents and organizational websites within the support sector for people living with dementia in Canada, England, and Wales. We also surveyed professionals to further explore the situation at the point of care and support delivery. Consistent with our approach, data collection and analysis occurred concurrently including the development of a series of analytic maps.

Results

Recognizing the complexities within the situation, our findings provided new insights on the situated structures for support action and the discursive representations that illuminate both the limitations of the current support landscape and possibilities for a more flexible and tailored rare dementia support. Alongside, the predominant universal versus tailored support positionings within our data reinforced the complexity from which a promising new social space for people living with rarer dementias is being cultivated.

Conclusions

The social worlds engaged in supportive action with people living with rare dementia are less visible within the shadow of a universally constructed dementia support milieu and appear to be negotiated within this powerful arena. However, their evolving organization and discursive constructions point to an emerging new social space for people living with rarer conditions.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12877-023-04268-4.

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Most cited references 40

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The diagnostic challenge of psychiatric symptoms in neurodegenerative disease: rates of and risk factors for prior psychiatric diagnosis in patients with early neurodegenerative disease.

L. Miller, Katherine P Rankin, Fatima Khan … (2011)

To identify rates of and risk factors for psychiatric diagnosis preceding the diagnosis of neurodegenerative disease. Systematic, retrospective, blinded chart review was performed of 252 patients with a neurodegenerative disease diagnosis seen in our specialty clinic between 1999 and 2008. Neurodegenerative disease diagnoses included behavioral-variant frontotemporal dementia (n = 69), semantic dementia (n = 41), and progressive nonfluent aphasia (n = 17) (all meeting Neary research criteria); Alzheimer's disease (n = 65) (National Institute of Neurologic and Communicative Disorders and Stroke-Alzheimer's Disease and Related Disorders Association research criteria); corticobasal degeneration (n = 25) (Boxer research criteria); progressive supranuclear palsy (n = 15) (Litvan research criteria); and amyotrophic lateral sclerosis (n = 20) (El Escorial research criteria). Reviewers remained blinded to each patient's final neurodegenerative disease diagnosis while reviewing charts. Extensive caregiver interviews were conducted to ensure accurate and reliable diagnostic histories. For each patient, we recorded history of psychiatric diagnosis, family psychiatric and neurologic history, age at symptom onset, and demographic information. A total of 28.2% of patients with a neurodegenerative disease received a prior psychiatric diagnosis. Depression was the most common psychiatric diagnosis in all groups. Behavioral-variant frontotemporal dementia patients received a prior psychiatric diagnosis significantly more often (50.7%; P < .001) than patients with Alzheimer's disease (23.1%), semantic dementia (24.4%), or progressive nonfluent aphasia (11.8%) and were more likely to receive diagnoses of bipolar disorder or schizophrenia than were patients with other neurodegenerative diseases (P < .001). Younger age (P < .001), higher education (P < .05), and a family history of psychiatric illness (P < .05) increased the rate of prior psychiatric diagnosis in patients with behavioral-variant frontotemporal dementia. Cognitive, behavioral, and emotional characteristics did not distinguish patients who did or did not receive a prior psychiatric diagnosis. Neurodegenerative disease is often misclassified as psychiatric disease, with behavioral-variant frontotemporal dementia patients at highest risk. While this study cannot rule out the possibility that psychiatric disease is an independent risk factor for neurodegenerative disease, when patients with neurodegenerative disease are initially classified with psychiatric disease, the patient may receive delayed, inappropriate treatment and be subject to increased distress. Physicians should consider referring mid- to late-life patients with new-onset neuropsychiatric symptoms for neurodegenerative disease evaluation. © Copyright 2011 Physicians Postgraduate Press, Inc.

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Alzheimer’s Disease: Past, Present, and Future

Mark W. Bondi, Emily C Edmonds, David P Salmon (2017)

Although dementia has been described in ancient texts over many centuries (e.g., “Be kind to your father, even if his mind fail him.” – Old Testament: Sirach 3:12), our knowledge of its underlying causes is little more than a century old. Alzheimer published his now famous case study only 110 years ago, and our modern understanding of the disease that bears his name, and its neuropsychological consequences, really only began to accelerate in the 1980s. Since then we have witnessed an explosion of basic and translational research into the causes, characterizations, and possible treatments for Alzheimer’s disease (AD) and other dementias. We review this lineage of work beginning with Alzheimer’s own writings and drawings, then jump to the modern era beginning in the 1970s and early 1980s and provide a sampling of neuropsychological and other contextual work from each ensuing decade. During the 1980s our field began its foundational studies of profiling the neuropsychological deficits associated with AD and its differentiation from other dementias (e.g., cortical vs . subcortical dementias). The 1990s continued these efforts and began to identify the specific cognitive mechanisms affected by various neuropathologic substrates. The 2000s ushered in a focus on the study of prodromal stages of neurodegenerative disease before the full-blown dementia syndrome (i.e., mild cognitive impairment). The current decade has seen the rise of imaging and other biomarkers to characterize preclinical disease before the development of significant cognitive decline. Finally, we suggest future directions and predictions for dementia-related research and potential therapeutic interventions. ( JINS , 2017, 23 , 818–831)

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Zooming In and Out: Studying Practices by Switching Theoretical Lenses and Trailing Connections

Davide Nicolini (2010)

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Author and article information

Contributors

Mary Pat Sullivan: marypat.sullivan@nipissingu.ca

Journal

Journal ID (nlm-ta): BMC Geriatr

Journal ID (iso-abbrev): BMC Geriatr

Title: BMC Geriatrics

Publisher: BioMed Central (London )

ISSN (Electronic): 1471-2318

Publication date (Electronic): 6 October 2023

Publication date PMC-release: 6 October 2023

Publication date Collection: 2023

Volume: 23

Electronic Location Identifier: 627

Affiliations

[1 ]Faculty of Education and Professional Studies, School of Social Work, Nipissing University, ( https://ror.org/05k14ba46) North Bay, ON Canada

[2 ]Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), ( https://ror.org/02jx3x895) London, UK

[3 ]Department of Clinical, Educational and Health Psychology, University College London (UCL), ( https://ror.org/02jx3x895) London, UK

[4 ]Ageing and Dementia @ Bangor, Dementia Services Development Centre (DSDC), School of Medical and Health Sciences, Bangor University, ( https://ror.org/006jb1a24) Bangor, UK

Article

Publisher ID: 4268

DOI: 10.1186/s12877-023-04268-4

PMC ID: 10557369

PubMed ID: 37803252

SO-VID: a2eb889e-adfa-4aa8-b26d-6eb5524828cc

License:

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 19 June 2023

Date accepted : 31 August 2023

Funding

Funded by: Economic and Social Research Council and National Institute for Health Research

Award ID: ES/S010467/1

Custom metadata

ScienceOpen disciplines: Geriatric medicine

Keywords: rarer dementias,young onset dementia,atypical dementia,situational analysis,care,support

Data availability:

ScienceOpen disciplines: Geriatric medicine

Keywords: rarer dementias, young onset dementia, atypical dementia, situational analysis, care, support

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Situating support for people living with rarer forms of dementia

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UCL: UN SDG 03 Good Health and Well-Being

Most cited references 40

The diagnostic challenge of psychiatric symptoms in neurodegenerative disease: rates of and risk factors for prior psychiatric diagnosis in patients with early neurodegenerative disease.

Alzheimer’s Disease: Past, Present, and Future

Zooming In and Out: Studying Practices by Switching Theoretical Lenses and Trailing Connections

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Cited by 2

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