The meaning of “total pain” in the context of living and dying with dementia

Frontiers in Sociology, Journal Year: 2025, Volume and Issue: 9

Published: April 9, 2025

Background Globally, there are 55 million people living with dementia (PLWD). PLWD have an uncertain prognosis. Most approaching the end of life but not overtly or immediately dying. Contemporary approaches to care therefore promote need live and die well dementia. Pain is highly prevalent difficult manage in PLWD. Originating palliative care, “total pain” conceives pain holistically, incorporating biological, psychological, social spiritual elements. management tends be pharmacologically focused. Total offers alternative approach—one consistent person-centred philosophy underpinning contemporary care. Due important differences, concepts cannot simply extrapolated from cancer-related dementia-related however. Dementia-specific needed require exploration. Description objective analysis The this paper explore meaning total context dying dementia, its utility implications for Using a framework existing literature, we critically consider bio-psycho-socio-spiritual impact how might manifest experienced context. Findings interpretation We highlight complexity, nuance socially contingent nature challenge binary understandings “continuity loss” (e.g., identity, relationships), totalising “loss” discourses, demonstrating that more subtle, varied hopeful outcomes possible. way articulated understood has experience pain. deficit-orientation ” paradoxically risks perpetuation. A balanced understanding dementia’s (acknowledging both continuity loss, alternatives constructed aspects) better reflects realities creates new possibilities supportive practices improve quality life. Conclusion practice Applied should located within critical context, emphasising contingency nuance. holistic focus “ extended incorporate consideration “painful” “functional” experience. introduce model dual on “pain” “personhood” facilitate translation practice. There develop evidence-based interventions each domain pain, support approach

Language: Английский

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Reaching consensus on outcomes for evaluating strengths-based approaches in adult social care and social work: A Delphi study conducted in England

Journal of Social Work, Journal Year: 2025, Volume and Issue: unknown

Published: April 15, 2025

Summary To advance our understanding of how we can best evaluate strengths-based approaches, aimed to establish: (1) What the relevant outcomes are in approaches adult social care and work England; (2) How feasible it would be measure them; (3) Which tools methodologies may used outcome measurement evaluation. We a Delphi consensus exercise refine reduce long list which had been identified previous as potentially useful evaluation approaches. The process consisted two rounds (Rounds 1 2). were divided into five levels measurement: for person who accesses work; unpaid or family carers; community; workforce organizations work. Findings Fifteen experts completed Round 11 2. At conclusion exercise, expert panel agreed that 26 (66.7%, out 39 considered) both part an also eight but not measure. Application This study provides set practitioners, researchers, policy makers consider when evaluating

Language: Английский

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What Matters to Patients with Alzheimer’s Disease and Their Care Partners? Implications for Understanding the Value of Future Interventions

The Journal of Prevention of Alzheimer s Disease, Journal Year: 2022, Volume and Issue: unknown

Published: Jan. 1, 2022

Alzheimer's Disease (AD) is the most common cause of dementia. Recent thinking portrays AD as a continuum consisting three stages: an asymptomatic preclinical period, mild cognitive impairment phase, and dementia, which can be further classified mild, moderate or severe. While many studies explore functional aspects AD, fully understanding pathophysiology, well potential value pharmacological psycho-social interventions, requires deeper patient care partner priorities, particularly in early stages where such interventions may have greatest impact slowing delaying progression. Available highlight diverse range including impacts on their emotions, moods, social lives. These priorities not been systematically incorporated clinical assessments interventions. We propose approaches to better understand humanistic conducting additional research into from point view patients partners, expanding notions 'value' improving health system capacity for diagnosis.

Language: Английский

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Participation of persons with dementia and their caregivers in research

Journal of the American Geriatrics Society, Journal Year: 2021, Volume and Issue: 69(7), P. 1784 - 1792

Published: July 1, 2021

The National Institute on Aging, in conjunction with the Department of Health and Human Services as part Alzheimer's Project Act, convened a 2020 Research Summit Care, Services, Supports for Persons Dementia their Caregivers. This review article addresses research participation by persons living dementia (PLWD) care partners two different ways: participants input outcomes studied engaged partners.This summarizes each topics presented at this session, followed reflection from session panelists. Lee Jennings examined collection directly PLWD potential individualized to enhance measurement intervention trials. Ron Petersen discussed impact nomenclature clinical care, how why investigators should be mindful connection between conduct research. Tabassum Majid strategies engagement research, including specific examples involving (including staff assisted skilled nursing facilities), improve our understanding interventions dementia.Research is evolving. three areas opportunity steps researchers work design that enhances knowledge based what we learn partners, creates them.

Language: Английский

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A scoping review of well-being measures: conceptualisation and scales for overall well-being

BMC Psychology, Journal Year: 2024, Volume and Issue: 12(1)

Published: Oct. 23, 2024

This study aims to identify the conceptualisation of overall well-being used for assessment through a review characteristics and key components and/or dimensions scales as presented in current literature. Scopus Web Science were searched, thematic analysis was conducted inductively analyse identified within scales, well types these measure. 107 peer-reviewed articles from 2003 2022 included, 69 covering nine areas well-being. Four final themes foundational well-being: hedonic; eudaimonic; physical health; generic happiness. Notably, are mainly validated adopted Western context. '4 + N' frameworks recommended assessing provides researchers with synthesis what have been measured which measures assess research participants. Non-Western-based is called that incorporates broader range participants cultural contexts contributing more inclusive understanding

Language: Английский

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Person‐centered assessment of people living with dementia: Review of existing measures

Alzheimer s & Dementia Translational Research & Clinical Interventions, Journal Year: 2021, Volume and Issue: 7(1)

Published: Jan. 1, 2021

Abstract Introduction Person‐centered care and assessment calls for measurement tools that help researchers providers understand people with dementia, their social relationships, experience of the environment. This paper reviewed available measures evaluated psychometric properties. Methods Literature searches major databases (PsycInfo, PubMed, EBSCO, CINAHL) papers examining person‐centered constructs in samples living dementia or mild cognitive impairment. Reliability validity coefficients were reported. Results We identified 26 unique had been tested dementia. Twelve hope, well‐being, engagement, meaning, resilience, stigma, spiritual beliefs practices, values preferences, positive psychology strong properties Discussion A variety reliability valid use research Additional measure development is needed key concepts including dignity strengths.

Language: Английский

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The Journeying through Dementia psychosocial intervention versus usual care study: a single-blind, parallel group, phase 3 trial

The Lancet Healthy Longevity, Journal Year: 2022, Volume and Issue: 3(4), P. e276 - e285

Published: April 1, 2022

BackgroundThere is an urgent clinical need for evidence-based psychosocial interventions people with mild dementia. We aimed to determine the benefits and cost-effectiveness of Journeying through Dementia (JtD), intervention designed promote wellbeing independence in dementia.MethodsWe did a single-blind, parallel group, individually randomised, phase 3 trial at 13 National Health Service sites across England. People dementia (Mini-Mental State Examination score ≥18) who lived community were eligible inclusion. Patients centrally randomly assigned (1:1) receive JtD plus standard care (JtD group) or only (standard group). Randomisation was stratified by study site. The included 12 group four one-to-one sessions, delivered each primary endpoint Related Quality Life (DEMQOL) 8 months after randomisation, assessed according intention-to-treat principle. Only outcome assessors masked assignment. A analysis reported cost per quality-adjusted life-year (QALY) from UK NHS social perspective. registered ISRCTN, ISRCTN17993825.FindingsBetween Nov 30, 2016, Aug 31, 2018, 1183 patients screened inclusion, whom 480 (41%) participants assigned: 241 (50%) 239 group. Intervention adherence very good: 165 (68%) attended least ten 16 sessions. Mean DEMQOL scores 93·3 (SD 13·0) 91·9 14·6) control Difference means 0·9 (95% CI –1·2 3·0; p=0·38) adjustment covariates, lower than that identified as clinically meaningful. Incremental QALY ranged £88 000 –£205 000, suggesting not cost-effective. Unrelated serious adverse events 40 (17%) 35 (15%) group.InterpretationIn common other studies, proven effective. However, this complex successfully recruited retained without necessarily involving carers. Additionally, actively involved advisers throughout. More research into methods measuring small, meaningful changes population needed. Questions remain regarding how services can match complex, diverse, individual needs dementia, meet such be scale.FundingUK Institute Research Technology Assessment Programme.

Language: Английский

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Happiness, positive emotions, and subjective well-being in dementia

Frontiers in Neurology, Journal Year: 2024, Volume and Issue: 15

Published: July 23, 2024

Research on non-cognitive features of dementia traditionally focusses neuropsychiatric symptoms and challenging behavior thus negative aspects the disease. Despite clinical observation that many patients frequently report subjective well-being often express positive emotions there is only little research definition, measurement determinants happiness in people living with dementia. Furthermore, few studies are, examined using retrospective questionnaires accounts relatives or caregivers. However, dementia, experiencing self becomes more significant since past future thinking are fading into background. Here, we review relative scarce literature this field, discuss different psychological constructs their applicability for research, suggest methods measuring addressed In particular, propose methodology to study experienced moment participants ecological momentary assessments (EMA). We believe adequate measures might become an important outcome parameter trials beyond currently used quality life measures.

Language: Английский

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Exploring assets of people with memory problems and dementia in public space: A qualitative study

Wellbeing Space and Society, Journal Year: 2021, Volume and Issue: 2, P. 100063 - 100063

Published: Jan. 1, 2021

With more people with dementia living at home, neighborhoods and public spaces are being recognized as care settings. Further, there is a shift from emphasizing the loss decline of person to focus on strength capacity. The aim this paper identify assets that contribute well-being memory problems in community context Netherlands. A deductive content analysis, based Asset-Based Community Development (ABCD) framework, was used analyze qualitative data collected through walking interviews in-depth eight participants. participants included six women two men ranged 59 93 years age. We identified an inventory physical, social institutional participants' well-being. These divided into categories relate well-being: a) navigate space, b) support inclusion encounters. observed it not one isolated type asset contributed well-being, but combination different assets. Moreover, we found gain sense relief, confidence their belonging inclusion. findings inform asset-based perspective can promote engagement dementia-informed development, space design, healthcare innovations improve range who live home.

Language: Английский

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Life satisfaction among persons living with dementia and those without dementia

Journal of the American Geriatrics Society, Journal Year: 2022, Volume and Issue: 71(4), P. 1105 - 1116

Published: Dec. 12, 2022

Abstract Background Despite possible major adverse cognitive, physical, social, and behavioral consequences, little is known about how persons living with dementia perceive satisfaction life, a key component of well‐being. We sought to examine (i) whether lower level compared their peers without (ii) the associations between individual characteristics life are different dementia. Methods Using nationally representative sample community‐dwelling older adults aged ≥70 years in U.S. from Health Retirement Study, we scores on Satisfaction Life Scale (SWLS), self‐reported 5‐item scale ranging 1 7 (more satisfaction), probable ( n = 341) those 5530), adjusting for characteristics. also tested SWLS differ by status. Results Scores did not when including limitations activities daily (ADL) (adjusted difference, −0.09; 95% CI, −0.33 +0.15; p ‐value, 0.45). However, status was associated through mediation ADL (total effect, −0.29; bootstrapped −0.47 −0.12). Most were similar two groups, younger age, more ADL, depression. Less wealth among but Conclusions Dementia only modestly participants who able provide response. Future research warranted determine can be used as meaningful outcome evaluating well‐being

Language: Английский

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