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Original Articles

We'll fight it as long as we can: Coping with the onset of Alzheimer's disease

Pages 139-148 | Published online: 09 Jun 2010

Keep up to date with the latest research on this topic with citation updates for this article.

Read on this site (33)

Paula Gasparini Emery Trindade, Aud Johannessen, Maria Alice Tourinho Baptista, Virgínia Maffiolletti & Marcia Cristina Nascimento Dourado. (2023) ‘I do not enjoy too much being with people, it takes me a long time to interact’: a qualitative analysis of awareness of relationships in people with dementia. Aging & Mental Health 27:6, pages 1120-1126.
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Sylwia M. Górska, Donald Maciver & Kirsty Forsyth. (2021) Participation as means for adaptation in dementia: a conceptual model. Aging & Mental Health 25:3, pages 499-511.
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Elja van der Wolf, Susan A. H. van Hooren, Wim Waterink & Lilian Lechner. (2021) Psychiatric and behavioral problems and well-being in gerontopsychiatric nursing home residents. Aging & Mental Health 25:2, pages 277-285.
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Katarzyna Małgorzata Lion, Dorota Szcześniak, Katarzyna Bulińska, Justyna Mazurek, Shirley B. Evans, Simon C. Evans, Francesca Lea Saibene, Alessia d’Arma, Claudia Scorolli, Elisabetta Farina, Dawn Brooker, Rabih Chattat, Franka J. M. Meiland, Rose-Marie Dröes & Joanna Rymaszewska. (2021) Does the Meeting Centre Support Programme decrease the experience of stigmatisation among people with cognitive deficits?. Aging & Mental Health 25:1, pages 160-169.
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Tammy L. Sheehy, Meghan H. McDonough & S. Elizabeth Zauber. (2017) Social Comparisons, Social Support, and Self-Perceptions in Group Exercise for People With Parkinson's Disease. Journal of Applied Sport Psychology 29:3, pages 285-303.
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A. Marijke van Haeften-van Dijk, Bart J. J. Hattink, Franka J. M. Meiland, Ton J. E. M. Bakker & Rose-Marie Dröes. (2017) Is socially integrated community day care for people with dementia associated with higher user satisfaction and a higher job satisfaction of staff compared to nursing home-based day care?. Aging & Mental Health 21:6, pages 624-633.
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E.L. Wolverson, C. Clarke & E.D. Moniz-Cook. (2016) Living positively with dementia: a systematic review and synthesis of the qualitative literature. Aging & Mental Health 20:7, pages 676-699.
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Susan Crawford Sullivan & Renée L. Beard. (2014) Faith and Forgetfulness: The Role of Spiritual Identity in Preservation of Self With Alzheimer's. Journal of Religion, Spirituality & Aging 26:1, pages 65-91.
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Joseph E. Gaugler, Martha Hovater, David L. Roth, Joseph A. Johnston, Robert L. Kane & Khaled Sarsour. (2014) Depressive, functional status, and neuropsychiatric symptom trajectories before an Alzheimer's disease diagnosis. Aging & Mental Health 18:1, pages 110-116.
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Annakarin Olsson, Claudia Lampic, Kirsti Skovdahl & Maria Engström. (2013) Persons with early-stage dementia reflect on being outdoors: a repeated interview study. Aging & Mental Health 17:7, pages 793-800.
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Anna Brorsson, Annika Öhman, Malcolm Cutchin & Louise Nygård. (2013) Managing critical incidents in grocery shopping by community-living people with Alzheimer's disease. Scandinavian Journal of Occupational Therapy 20:4, pages 292-301.
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Pauline Boland, William M. M. Levack, Sheena Hudson & Elliot M. Bell. (2012) Coping with multiple sclerosis as a couple: ‘peaks and troughs’ – an interpretative phenomenological exploration. Disability and Rehabilitation 34:16, pages 1367-1375.
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Rose-Marie Dröes, Henriëtte G van der Roest, Lisa van Mierlo & Franka JM Meiland. (2011) Memory problems in dementia: adaptation and coping strategies and psychosocial treatments. Expert Review of Neurotherapeutics 11:12, pages 1769-1782.
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M. Rebecca Genoe & SherryL. Dupuis. (2011) “I'm just like I always was”: a phenomenological exploration of leisure, identity and dementia. Leisure/Loisir 35:4, pages 423-452.
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Alison Phinney. (2011) Horizons of Meaning in Dementia: Retained and Shifting Narratives. Journal of Religion, Spirituality & Aging 23:3, pages 254-268.
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Nina M. Silverstein & Robin Sherman. (2010) Taking Control of Alzheimer's Disease: A Training Evaluation. Gerontology & Geriatrics Education 31:3, pages 274-288.
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Michelle Palmer, Michael Larkin, Richard de Visser & Gráinne Fadden. (2010) Developing an Interpretative Phenomenological Approach to Focus Group Data. Qualitative Research in Psychology 7:2, pages 99-121.
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Emma L. Wolverson (Radbourne)Christopher Clarke & Esme Moniz-Cook. (2010) Remaining hopeful in early-stage dementia: A qualitative study. Aging & Mental Health 14:4, pages 450-460.
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Melanie Braun, Urte Scholz, Barbara Bailey, Sonja Perren, Rainer Hornung & Mike Martin. (2009) Dementia caregiving in spousal relationships: A dyadic perspective. Aging & Mental Health 13:3, pages 426-436.
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Jan Rachel Oyebode, Jamilah R. Motala, Rachel M. Hardy & Chris Oliver. (2009) Coping with challenges to memory in people with mild to moderate Alzheimer's disease: Observation of behaviour in response to analogues of everyday situations. Aging & Mental Health 13:1, pages 46-53.
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Catherine Quinn, Linda Clare, Alison Pearce & Michael van Dijkhuizen. (2008) The experience of providing care in the early stages of dementia: An interpretative phenomenological analysis. Aging & Mental Health 12:6, pages 769-778.
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J. R. Oyebode, A. L. Telling, R. M. Hardy & J. Austin. (2007) Awareness of memory functioning in early Alzheimer's disease: Lessons from a comparison with healthy older people and young adults. Aging & Mental Health 11:6, pages 761-767.
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CeesM. P. M. Hertogh, MarikeE. de Boer, Rose-Marie Dröes & JanA. Eefsting. (2007) Would We Rather Lose Our Life Than Lose Our Self? Lessons From the Dutch Debate on Euthanasia for Patients With Dementia. The American Journal of Bioethics 7:4, pages 48-56.
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Laura Preston, Ann Marshall & Romola S. Bucks. (2007) Investigating the ways that older people cope with dementia: A qualitative study. Aging & Mental Health 11:2, pages 131-143.
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Kathryn Betts Adams. (2006) The Transition to Caregiving. Journal of Gerontological Social Work 47:3-4, pages 3-29.
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E. Derksen, M. Vernooij-Dassen, F. Gillissen, M. Olde Rikkert & P. Scheltens. (2006) Impact of diagnostic disclosure in dementia on patients and carers: Qualitative case series analysis. Aging & Mental Health 10:5, pages 525-531.
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Tamara Ownsworth, Linda Clare & Robin Morris. (2006) An integrated biopsychosocial approach to understanding awareness deficits in Alzheimer's disease and brain injury. Neuropsychological Rehabilitation 16:4, pages 415-438.
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Joanna M. Brocki & Alison J. Wearden. (2006) A critical evaluation of the use of interpretative phenomenological analysis (IPA) in health psychology. Psychology & Health 21:1, pages 87-108.
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Bob Woods & Rebekah Pratt. (2005) Awareness in dementia: Ethical and legal issues in relation to people with dementia. Aging & Mental Health 9:5, pages 423-429.
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Linda Clare, Ivana Marková, Frans Verhey & Geraldine Kenny. (2005) Awareness in dementia: A review of assessment methods and measures. Aging & Mental Health 9:5, pages 394-413.
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L. Robinson, L. Clare & K. Evans. (2005) Making sense of dementia and adjusting to loss: Psychological reactions to a diagnosis of dementia in couples. Aging & Mental Health 9:4, pages 337-347.
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S. Lliffe & J. Manthorpe. (2004) Editorial: The hazards of early recognition of dementia: a risk assessment. Aging & Mental Health 8:2, pages 99-105.
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Articles from other publishers (166)

Sabrina D. Ross, Jennifer Kreß & Francisca S. Rodriguez. (2023) Self‐perceived problems in daily activities and strategy building in people with different stages of dementia. Psychogeriatrics.
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Xueting Tang, Junqiao Wang, Bei Wu, Ann-Margaret Navarra, Xiaoyan Cui & Jing Wang. (2023) Lived experiences of maintaining self-identity among persons living with young-onset dementia: A qualitative meta-synthesis. Dementia 22:8, pages 1776-1798.
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Suzanne Gray, Ashley Shepherd & Jane Robertson. (2023) Living with a diagnosis of frontotemporal dementia: An interpretative phenomenological analysis. Dementia 22:3, pages 514-532.
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A. Burbaite, S. Leeworthy, L. Hirst, E. Mioshi, L. Clare & S. Ahmed. (2023) Suitability of memory aids and strategies for people with posterior cortical atrophy: protocol for a scoping review. Systematic Reviews 12:1.
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Sarah Kate Smith, Emma Louise Wolverson & Gail Anne Mountain. (2022) What is intended by the term “participation” and what does it mean to people living with dementia? A conceptual overview and directions for future research. Frontiers in Rehabilitation Sciences 3.
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Emma Wolverson, Caroline White, Rosie Dunn, Katie Cunnah, David Howe, Kevin Paulson, Rebecca Platt & Jonathan Thorpe. (2021) The use of a bespoke website developed for people with dementia and carers: Users’ experiences, perceptions and support needs. Dementia 21:1, pages 94-113.
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David Peter Neal, Yvonne J. F. Kerkhof, Teake P. Ettema, Majon Muller, Judith Bosmans, Evelyn Finnema, Maud Graff, Karin Dijkstra, Max L. Stek & Rose-Marie Dröes. (2021) Evaluation of FindMyApps: protocol for a randomized controlled trial of the effectiveness and cost-effectiveness of a tablet-based intervention to improve self-management and social participation of community-dwelling people with mild dementia, compared to usual tablet use. BMC Geriatrics 21:1.
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Josie Henley, Alexandra Hillman, Ian Rees Jones, Bob Woods, Catherine Anne MacLeod, Claire Pentecost & Linda Clare. (2021) ‘We're happy as we are’: the experience of living with possible undiagnosed dementia. Ageing and Society, pages 1-26.
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Laura Dewitte, Els van Wijngaarden, Tine Schellekens, Mathieu Vandenbulcke & Jessie Dezutter. (2021) Continuing to Participate in the Dance of Life as Oneself: The Lived Experience of Meaning in Life for Older Adults With Alzheimer’s Disease. The Gerontologist 61:7, pages 1019-1029.
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Erik Piculell, Lisa Skär, Johan Sanmartin Berglund, Peter Anderberg & Doris Bohman. (2020) A concept analysis of health communication in a home environment: Perspectives of older persons and their informal caregivers. Scandinavian Journal of Caring Sciences 35:3, pages 1006-1024.
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Anca M Miron, Alexandria R Ebert & Amy E Hodel. (2018) The morality of lying to my grandparent with dementia. Dementia 19:7, pages 2251-2266.
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Lucy Conway, Emma Wolverson & Chris Clarke. (2020) Shared Experiences of Resilience Amongst Couples Where One Partner Is Living With Dementia—A Grounded Theory Study. Frontiers in Medicine 7.
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Sarah J Barber, Dina Kireeva, Jordan Seliger & Eranda Jayawickreme. (2020) Wisdom Once Gained Is Not Easily Lost: Implicit Theories About Wisdom and Age-Related Cognitive Declines. Innovation in Aging 4:2.
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Barbara K Sharp. (2017) Stress as Experienced by People with Dementia: An Interpretative Phenomenological Analysis. Dementia 18:4, pages 1427-1445.
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Mark S. Allen, Sylvain Laborde & Emma E. Walter. (2017) Health-Related Behavior Mediates the Association Between Personality and Memory Performance in Older Adults. Journal of Applied Gerontology 38:2, pages 232-252.
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Morwenna Rogers, Alison Bethel & Rebecca Abbott. (2017) Locating qualitative studies in dementia on MEDLINE, EMBASE, CINAHL, and PsycINFO: A comparison of search strategies. Research Synthesis Methods 9:4, pages 579-586.
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JARI PIRHONEN, ELISA TIILIKAINEN & ILKKA PIETILÄ. (2017) Ruptures of affiliation: social isolation in assisted living for older people. Ageing and Society 38:9, pages 1868-1886.
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Juan C. Meléndez, Encarna Satorres, Rita Redondo, Joaquín Escudero & Alfonso Pitarque. (2018) Wellbeing, resilience, and coping: Are there differences between healthy older adults, adults with mild cognitive impairment, and adults with Alzheimer-type dementia?. Archives of Gerontology and Geriatrics 77, pages 38-43.
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Lee-Fay Low, Kate Swaffer, Margaret McGrath & Henry Brodaty. (2017) Do people with early stage dementia experience Prescribed Disengagement ® ? A systematic review of qualitative studies . International Psychogeriatrics 30:6, pages 807-831.
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Pauline Boland, William MM Levack, Sheena Hudson & Elliot Bell. (2018) A qualitative exploration of barriers and facilitators to coping experienced by couples when one has multiple sclerosis. International Journal of Therapy and Rehabilitation 25:5, pages 240-246.
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Jenny Melind Bergschöld. (2018) Configuring Dementia; How Nursing Students Are Taught to Shape the Sociopolitical Role of Gerontechnologies. Frontiers in Sociology 3.
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Elena Portacolone, Julene K. Johnson, Kenneth E. Covinsky, Jodi Halpern & Robert L. Rubinstein. (2018) The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone. Journal of Alzheimer's Disease 61:4, pages 1517-1529.
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Sara Lima, Miguel Gago, Carolina Garrett & M. Graça Pereira. (2016) Predictors and Moderators of Quality of Life in Alzheimer’s Disease Patients. Journal of Alzheimer's Disease 54:3, pages 1113-1121.
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Emilie Wawrziczny, Pascal Antoine, Francine Ducharme, Marie-Jeanne Kergoat & Florence Pasquier. (2016) Couples' experiences with early-onset dementia: An interpretative phenomenological analysis of dyadic dynamics. Dementia 15:5, pages 1082-1099.
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Sara M Powers, Nicole T Dawson, Maura L Krestar, Sarah J Yarry & Katherine S Judge. (2016) ‘I wish they would remember that I forget:’ The effects of memory loss on the lives of individuals with mild-to-moderate dementia. Dementia 15:5, pages 1053-1067.
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Pamela A. Saunders, Julia Ruth, Lauren Latella & Nicholas Talisman. (2016) Communicative Coping Behavior Checklist: Observation of Persons With Dementia in the Home Environment. The Gerontologist 56:4, pages e63-e69.
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Jari Pirhonen & Ilkka Pietilä. (2016) Perceived resident–facility fit and sense of control in assisted living. Journal of Aging Studies 38, pages 47-56.
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Ali Reza Majlesi & Anna Ekström. (2016) Baking together—the coordination of actions in activities involving people with dementia. Journal of Aging Studies 38, pages 37-46.
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Oscar Tranvåg, Karin Anna Petersen & Dagfinn Nåden. (2014) Crucial dimensions constituting dignity experience in persons living with dementia. Dementia 15:4, pages 578-595.
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Mari Wolff Skaalvik, Astrid Norberg, Ketil Normann, Aud-Mari Fjelltun & Kenneth Asplund. (2014) The experience of self and threats to sense of self among relatives caring for people with Alzheimer’s disease. Dementia 15:4, pages 467-480.
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Elaine C Wiersma, Deborah L O’Connor, Lisa Loiselle, Kathy Hickman, Bill Heibein, Brenda Hounam & Jim Mann. (2016) Creating space for citizenship: The impact of group structure on validating the voices of people with dementia. Dementia 15:3, pages 414-433.
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Ragnhild Hedman, Görel Hansebo, Britt-Marie Ternestedt, Ingrid Hellström & Astrid Norberg. (2014) Expressed Sense of Self by People With Alzheimer’s Disease in a Support Group Interpreted in Terms of Agency and Communion. Journal of Applied Gerontology 35:4, pages 421-443.
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Mari Wolff Skaalvik, Aud-Mari Sohini Fjelltun, Hans Ketil Normann & Astrid Norberg. (2016) Expressions of Sense of Self Among Individuals With Alzheimer’s Disease. Research and Theory for Nursing Practice 30:2, pages 161-175.
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Valerie T. Cotter & Julie Teixeira. 2016. Dementia Care. Dementia Care 61 70 .
Ivy T. Y. Lam & Heather H. Keller. (2012) Honoring Identity Through Mealtimes in Chinese Canadian Immigrants. American Journal of Alzheimer's Disease & Other Dementiasr 30:7, pages 662-671.
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Rachel F. Buckley, Michael M. Saling, Ingo Frommann, Steffen Wolfsgruber & Michael Wagner. (2015) Subjective Cognitive Decline from a Phenomenological Perspective: A Review of the Qualitative Literature. Journal of Alzheimer's Disease 48:s1, pages S125-S140.
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Oscar Tranvåg, Karin Anna Petersen & Dagfinn Nåden. (2014) Relational interactions preserving dignity experience. Nursing Ethics 22:5, pages 577-593.
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DOT WEAKS, HEATHER WILKINSON & JOHN McLEOD. (2014) Daring to tell: the importance of telling others about a diagnosis of dementia. Ageing and Society 35:4, pages 765-784.
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Linda Clare, Sharon M Nelis, Catherine Quinn, Anthony Martyr, Catherine Henderson, John V Hindle, Ian R Jones, Roy W Jones, Martin Knapp, Michael D Kopelman, Robin G Morris, James A Pickett, Jennifer M Rusted, Nada M Savitch, Jeanette M Thom & Christina R Victor. (2014) Improving the experience of dementia and enhancing active life - living well with dementia: study protocol for the IDEAL study. Health and Quality of Life Outcomes 12:1.
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Gemma Clemerson, Sue Walsh & Claire Isaac. (2013) Towards living well with young onset dementia: An exploration of coping from the perspective of those diagnosed. Dementia 13:4, pages 451-466.
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Laura A Stokes, Helen Combes & Graham Stokes. (2012) Understanding the dementia diagnosis: The impact on the caregiving experience. Dementia 13:1, pages 59-78.
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M Rebeccas Genoe & Sherry L Dupuis. (2012) The role of leisure within the dementia context. Dementia 13:1, pages 33-58.
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Ragnhild Hedman, Görel Hansebo, Britt-Marie Ternestedt, Ingrid Hellström & Astrid Norberg. (2012) How people with Alzheimer’s disease express their sense of self: Analysis using Rom Harré’s theory of selfhood. Dementia 12:6, pages 713-733.
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Monir Mazaheri, Lars E Eriksson, Kristiina Heikkilä, Alireza Nikbakht Nasrabadi, Sirkka-Liisa Ekman & Helena Sunvisson. (2013) Experiences of living with dementia: qualitative content analysis of semi-structured interviews. Journal of Clinical Nursing 22:21-22, pages 3032-3041.
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Bjørg T. Landmark, Heid Svenkerud Aasgaard & Lisbeth Fagerström. (2013) “To Be stuck in It—I Can’t Just Leave”. Home Health Care Management & Practice 25:5, pages 217-223.
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Madeleine Blusi, Kenneth Asplund & Mats Jong. (2013) Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT). European Journal of Ageing 10:3, pages 191-199.
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Stephanie Daley, David Newton, Mike Slade, Joanna Murray & Sube Banerjee. (2012) Development of a framework for recovery in older people with mental disorder. International Journal of Geriatric Psychiatry 28:5, pages 522-529.
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Deirdre Fetherstonhaugh, Laura Tarzia & Rhonda Nay. (2013) Being central to decision making means I am still here!: The essence of decision making for people with dementia. Journal of Aging Studies 27:2, pages 143-150.
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Renée L. Beard & Tara M. Neary. (2012) Making sense of nonsense: experiences of mild cognitive impairment. Sociology of Health & Illness 35:1, pages 130-146.
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Anis Hashim, Riaza Mohd. Rias & Muhamad Fairus Kamaruzaman. 2013. Advances in Visual Informatics. Advances in Visual Informatics 508 515 .
Steven H. Zarit & Allison M. Reamy. 2013. Caregiving for Alzheimer’s Disease and Related Disorders. Caregiving for Alzheimer’s Disease and Related Disorders 51 69 .
Marja-Liisa Laakkonen, Eeva H Hölttä, Niina Savikko, Timo E Strandberg, Merja Suominen & Kaisu H Pitkälä. (2012) Psychosocial group intervention to enhance self-management skills of people with dementia and their caregivers: study protocol for a randomized controlled trial. Trials 13:1.
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Frances Bunn, Claire Goodman, Katie Sworn, Greta Rait, Carol Brayne, Louise Robinson, Elaine McNeilly & Steve Iliffe. (2012) Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies. PLoS Medicine 9:10, pages e1001331.
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Soraya M. Frazer, Jan R. Oyebode & Adam Cleary. (2011) How older women who live alone with dementia make sense of their experiences: An interpretative phenomenological analysis. Dementia 11:5, pages 677-693.
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M. Rebecca Genoe, Heather H. Keller, Lori Schindel Martin, Sherry L. Dupuis, Holly Reimer, Carly Cassolato & Gayle Edward. (2012) Adjusting to Mealtime Change within the Context of Dementia. Canadian Journal on Aging / La Revue canadienne du vieillissement 31:2, pages 173-194.
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Pamela A. Saunders, Kate de Medeiros, Patrick Doyle & Amanda Mosby. (2011) The discourse of friendship: Mediators of communication among dementia residents in long-term care. Dementia 11:3, pages 347-361.
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Louise McCabe & Brittany Ellis Bradley. (2012) Supporting User Participation in Local Policy Development: The Fife Dementia Strategy. Social Policy and Society 11:2, pages 157-169.
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