Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies

A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.

• Publication year

  2012

• Venue

  PLoS Medicine

• Publication date

  2012-10-01

• Fields of study

  Medicine, Psychology

• Identifiers
  DOI 10.1371/journal.pmed.1001331PMID 23118618PMCID 3484131
• External record

  Open on Semantic Scholar

• Source metadata

  Semantic Scholar, PubMed

• No claims are published for this paper.

• No concepts are published for this paper.

• Learning to live with early dementia.

  2016influential reference
• Why do ethnic elders present later to UK dementia services? A qualitative study

  2011cited by this paper
• Family triad perceptions of mild cognitive impairment.

  2011cited by this paper
• The Nature and Scope of Stressful Spousal Caregiving Relationships

  2011cited by this paper
• The transition to dementia – individual and family experiences of receiving a diagnosis: a review

  2011cited by this paper
• The transition from cognitive impairment to dementia: older people's experiences

  2011cited by this paper
• Pathways to diagnosis: exploring the experiences of problem recognition and obtaining a dementia diagnosis among Anglo-Canadians.

  2011cited by this paper
• Threat to valued elements of life: the experience of dementia across three ethnic groups.

  2011cited by this paper
• Remaining hopeful in early-stage dementia: A qualitative study

  2010cited by this paper
• Process of ambivalent normalisation: experience of family caregivers of elders with mild cognitive impairment in Taiwan.

  2010cited by this paper
• Living alone with dementia: an interpretive phenomenological study with older women.

  2010cited by this paper
• Care partner responses to the onset of mild cognitive impairment.

  2010cited by this paper
• Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK

  2010cited by this paper
• Parental perceptions regarding healthy behaviours for preventing overweight and obesity in young children: a systematic review of qualitative studies

  2010cited by this paper
• Survival of people with clinical diagnosis of dementia in primary care: cohort study

  2010cited by this paper
• Good days and bad days: The lived experience and perceived impact of treatment with cholinesterase inhibitors for Alzheimer’s disease in the United Kingdom

  2010cited by this paper
• The Perspective of the Person with Dementia

  2010influential reference
• Improving Dementia Services in England - an Interim Report

  2010cited by this paper
• What Matters Most to Carers of People with Mild to Moderate Dementia as Evidence for Transforming Care

  2010cited by this paper
• Managing Identity While Living With Alzheimer’s Disease

  2010cited by this paper
• World Alzheimer Report 2009

  2009cited by this paper
• Narratives in a users' and carers' group: meanings and impact

  2009cited by this paper
• Selfhood in younger onset dementia: Transitions and testimonies

  2009cited by this paper
• Experience and perspectives of caregivers of spouse with mild cognitive impairment.

  2009cited by this paper
• Renewing Everyday Hope: The Hope Experience of Family Caregivers of Persons with Dementia

  2009cited by this paper
• The two voices of Alzheimer's: attitudes toward brain health by diagnosed individuals and support persons.

  2009cited by this paper
• The ‘Twice a Child’ projects: learning about dementia and related disorders within the black and minority ethnic population of an English city and improving relevant services

  2009cited by this paper
• From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia

  2009cited by this paper
• View of life in persons with dementia

  2009cited by this paper
• Living on the threshold: The spatial experience of living alone with dementia

  2009cited by this paper
• `I was worried coming in because I don't really know why it was arranged'

  2008cited by this paper
• Methods for the thematic synthesis of qualitative research in systematic reviews

  2008cited by this paper
• Mild cognitive impairment: coping with an uncertain label

  2008cited by this paper
• Dementia

  2008cited by this paper
• Attitudes and support needs of Black Caribbean, south Asian and White British carers of people with dementia in the UK.

  2008cited by this paper
• How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care?

  2008cited by this paper
• A systematic review of older people's perceptions of facilitators and barriers to participation in falls-prevention interventions

  2008cited by this paper
• Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss.

  2008influential reference
• The experience of providing care in the early stages of dementia: An interpretative phenomenological analysis

  2008influential reference
• Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of 'best practice'

  2008cited by this paper
• The impact of early dementia on outdoor life

  2008cited by this paper
• Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention.

  2007cited by this paper
• Sustaining `couplehood'

  2007cited by this paper
• Dimensions of Ambiguous Loss in Couples Coping With Mild Cognitive Impairment

  2007cited by this paper
• Living with dementia from the perspective of older people: Is it a positive story?

  2007cited by this paper
• Emotional impact of dementia diagnosis: Exploring persons with dementia and caregivers’ perspectives

  2007cited by this paper
• Improving the quality of care for mild to moderate dementia: an evaluation of the Croydon Memory Service Model

  2007cited by this paper
• Dementia Diagnosis Disclosure: A Study of Patient and Caregiver Perspectives

  2007cited by this paper
• Suffering from dementia – the patient's perspective: a review of the literature

  2007cited by this paper
• Investigating the ways that older people cope with dementia: A qualitative study

  2007cited by this paper
• Living with early-stage dementia: the perspective of older Chinese people.

  2007cited by this paper
• Doing as much as I can do: The meaning of activity for people with dementia

  2007cited by this paper
• Making sense of dementia in the social world: a qualitative study.

  2007cited by this paper
• Symptoms of dementia among adults with Down's syndrome: a qualitative study.

  2007cited by this paper
• Bmc Medical Research Methodology Open Access Recruiting and Retaining Gps and Patients in Intervention Studies: the Deps-gp Project as a Case Study

  2007influential reference
• Illness Representations and Lived Experience in Early-Stage Dementia

  2006cited by this paper
• Impact of diagnostic disclosure in dementia on patients and carers: Qualitative case series analysis

  2006cited by this paper
• Factors that shape young people's sexual behaviour: a systematic review.

  2006cited by this paper
• ‘Coming out’ with Alzheimer's disease: Changes in awareness during a psychotherapy group for people with dementia

  2006cited by this paper
• The Transition to Caregiving

  2006cited by this paper
• Family Strategies for Supporting Involvement in Meaningful Activity by Persons With Dementia

  2006cited by this paper
• Making sense of mild cognitive impairment: a qualitative exploration of the patient's experience.

  2006cited by this paper
• The Impact of the Label of Mild Cognitive Impairment on the Individual's Sense of Self

  2006influential reference
• The development of memory difficulties: A journey into the unknown

  2006cited by this paper
• Dementia from the inside: how people with early-stage dementia evaluate their quality of life.

  2006cited by this paper
• Caring for a partner with Alzheimer's disease: Intimacy, loss and the life that is possible

  2006cited by this paper
• Living with early-stage dementia: a review of qualitative studies.

  2006cited by this paper
• Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants

  2006cited by this paper
• Dementia Caregiving: The Experiences of Hispanic/Latino Caregivers

  2005cited by this paper
• African American, Chinese, and Latino family caregivers' impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences.

  2005cited by this paper
• Finding the balance: living with memory loss.

  2005cited by this paper
• The impact of diagnostic disclosure in dementia: a qualitative case analysis

  2005cited by this paper
• Perceptions of change over time in early-stage Alzheimer's disease

  2005cited by this paper
• Processes and experiences of mutual support in professionally-led support groups for people with early-stage dementia

  2005cited by this paper
• Organization of old age psychiatric services

  2005cited by this paper
• Experiences in early stage Alzheimer's disease: Understanding the paradox of acceptance and denial

  2005cited by this paper
• Making sense of dementia and adjusting to loss: Psychological reactions to a diagnosis of dementia in couples

  2005cited by this paper
• Awareness context theory and the dynamics of dementia

  2005cited by this paper
• Effectiveness and efficiency of search methods in systematic reviews of complex evidence: audit of primary sources

  2005cited by this paper
• The intimate mediator: a carer's experience of Alzheimer's.

  2005cited by this paper
• In their voices: Identity preservation and experiences of Alzheimer's disease

  2004cited by this paper
• Developing Optimal Search Strategies for Detecting Clinically Relevant Qualitative Studies in MEDLINE

  2004cited by this paper
• 'How can they tell?' A qualitative study of the views of younger people about their dementia and dementia care services.

  2004influential reference
• Living with Dementia Yields a Heteronomous and Lost Existence

  2004cited by this paper
• The problem of appraising qualitative research

  2004cited by this paper
• Disclosing a diagnosis of dementia: a systematic review

  2004cited by this paper
• Pathways to Dementia Diagnosis: Evidence for Cross-Ethnic Differences

  2004cited by this paper
• Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians.

  2004cited by this paper
• ‘I Know Where this is Going and I Know it won’t Go Back’

  2004cited by this paper
• Gendered communication among young people in Mexico: implications for sexual health interventions.

  2004cited by this paper
• Managing threats to self: awareness in early stage Alzheimer's disease.

  2003cited by this paper
• Exploring the meaning of everyday life, for those suffering from dementia

  2003cited by this paper
• Quality in qualitative evaluation: A framework for assessing research evidence. A quality framework.

  2003cited by this paper
• The dimensions of insight in people with dementia

  2003cited by this paper
• 'We didn't know it would get that bad': South Asian experiences of dementia and the service response.

  2003cited by this paper
• Caregivers of people with Alzheimer's disease: a qualitative study from the Indian 10/66 Dementia Research Network

  2003cited by this paper
• The lived body in dementia

  2003cited by this paper
• Family Experiences in the Journey Through Dementia Diagnosis and Care

  2003cited by this paper
• Unfulfilled expectations and negative interactions: nonsupport in the relationships of women caregivers.

  2003cited by this paper
• Screening for Dementia in Primary Care: A Summary of the Evidence for the U.S. Preventive Services Task Force

  2003cited by this paper

• Self-Perceptions of Aging in Older Adults: A Network Analysis of Clinical and Non-Clinical Samples.

  2026cites this paper
• Advancing Dementia-Friendly Communities Through Dialogical Community Development.

  2026cites this paper
• Lived experiences of Lewy body dementia diagnosis and care in Ireland

  2026cites this paper
• SOCAV, a nurse-led program promoting self-direction in nursing homes: a longitudinal mixed-methods pilot study.

  2026cites this paper
• Dementia in primary care: a qualitative study with general practitioners and caregivers with and without migration backgrounds

  2025cites this paper
• Exploring experiences of dementia post-diagnosis support and ideas for improving practice: A co-produced study

  2025cites this paper
• A mapping review of studies exploring the barriers and facilitators to a dementia diagnosis through an intersectionality lens

  2025cites this paper
• Challenges and needs in dementia care: people with dementia and family caregivers' experiences from diagnosis to follow-up in Swedish primary care: a qualitative study.

  2025cites this paper
• Impact of the Diagnosis of Dementia in Older Care-recipients on Their Family Caregivers' Depressive Symptoms and Quality of Life.

  2025cites this paper
• Culturally sensitive CLEAR guidelines on disclosing and communicating a diagnosis of dementia

  2025cites this paper
• Older US adults’ experiences with and views about cognitive screening and blood biomarker testing for Alzheimer's disease

  2025cites this paper
• Brief cognitive screening tools for dementia in low-educated population from South America: A systematic review.

  2025cites this paper
• Experiences of inner strength in persons newly diagnosed with mild cognitive impairment: A qualitative study.

  2025cites this paper
• A qualitative study of people with Alzheimer’s disease in a memory clinic considering lecanemab treatment

  2025cites this paper
• Time to Diagnosis in Dementia: A Systematic Review With Meta‐Analysis

  2025cites this paper
• Determinants of dementia diagnosis in U.S. primary care in the past decade: A scoping review

  2025cites this paper
• Systematic review of therapeutic interventions for psychological adjustment to physical health diagnoses in adults.

  2025cites this paper
• Decline in Incidence and Prevalence of Dementia: An Analysis of Outpatient Claims Data.

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• Designing healthcare systems for earlier diagnosis and prevention of dementia

  2024cites this paper
• Guideline summary: assessment, diagnosis, care and support for people with dementia and their carers [Scottish Intercollegiate Guidelines Network SIGN Guideline 168]

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