IDEAS home Printed from https://ideas.repec.org/a/plo/pmed00/1001331.html
   My bibliography  Save this article

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

Author

Listed:
  • Frances Bunn
  • Claire Goodman
  • Katie Sworn
  • Greta Rait
  • Carol Brayne
  • Louise Robinson
  • Elaine McNeilly
  • Steve Iliffe

Abstract

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. Background: Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice. Methods and Findings: We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis. Conclusions: There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis. Background: Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple. Why Was This Study Done?: This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers. What Did the Researchers Do and Find?: The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers. What Do These Findings Mean?: Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs. Additional Information: Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001331.

Suggested Citation

  • 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, Public Library of Science, vol. 9(10), pages 1-1, October.
  • Handle: RePEc:plo:pmed00:1001331
    DOI: 10.1371/journal.pmed.1001331
    as

    Download full text from publisher

    File URL: https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001331
    Download Restriction: no

    File URL: https://journals.plos.org/plosmedicine/article/file?id=10.1371/journal.pmed.1001331&type=printable
    Download Restriction: no

    File URL: https://libkey.io/10.1371/journal.pmed.1001331?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Hutchinson, Sally A. & Leger-Krall, Sue & Wilson, Holly Skodol, 1997. "Early probable Alzheimer's Disease and Awareness Context Theory," Social Science & Medicine, Elsevier, vol. 45(9), pages 1399-1409, November.
    2. Clare, Linda, 2003. "Managing threats to self: awareness in early stage Alzheimer's disease," Social Science & Medicine, Elsevier, vol. 57(6), pages 1017-1029, September.
    3. Li‐Min Kuo & Yea‐Ing L Shyu, 2010. "Process of ambivalent normalisation: experience of family caregivers of elders with mild cognitive impairment in Taiwan," Journal of Clinical Nursing, John Wiley & Sons, vol. 19(23‐24), pages 3477-3484, December.
    4. Marston, Cicely, 2004. "Gendered communication among young people in Mexico: implications for sexual health interventions," Social Science & Medicine, Elsevier, vol. 59(3), pages 445-456, August.
    5. Campbell, Rona & Pound, Pandora & Pope, Catherine & Britten, Nicky & Pill, Roisin & Morgan, Myfanwy & Donovan, Jenny, 2003. "Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care," Social Science & Medicine, Elsevier, vol. 56(4), pages 671-684, February.
    6. Karen A. Roberto & Rosemary Blieszner & Brandy Renee McCann & Marya C. McPherson, 2011. "Family Triad Perceptions of Mild Cognitive Impairment," The Journals of Gerontology: Series B, The Gerontological Society of America, vol. 66(6), pages 756-768.
    7. Beard, Renée L. & Fox, Patrick J., 2008. "Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss," Social Science & Medicine, Elsevier, vol. 66(7), pages 1509-1520, April.
    8. Langdon, Shani A. & Eagle, Andrew & Warner, James, 2007. "Making sense of dementia in the social world: A qualitative study," Social Science & Medicine, Elsevier, vol. 64(4), pages 989-1000, February.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Hanna‐Mari Pesonen & Anne M. Remes & Arja Isola, 2013. "Diagnosis of dementia as a turning point among Finnish families: A qualitative study," Nursing & Health Sciences, John Wiley & Sons, vol. 15(4), pages 489-496, December.
    2. Smith, Robert Courtney, 2021. "Analytic autoethnography of familial and institutional social identity construction of My Dad with Alzheimer's: In the emergency room with Erving Goffman and Oliver Sacks," Social Science & Medicine, Elsevier, vol. 277(C).
    3. Beard, Renée L. & Fox, Patrick J., 2008. "Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss," Social Science & Medicine, Elsevier, vol. 66(7), pages 1509-1520, April.
    4. Rapp, Thomas, 2014. "Patients' diagnosis decisions in Alzheimer's disease: The influence of family factors," Social Science & Medicine, Elsevier, vol. 118(C), pages 9-16.
    5. Johnson, Rebecca & Harkins, Kristin & Cary, Mark & Sankar, Pamela & Karlawish, Jason, 2015. "The relative contributions of disease label and disease prognosis to Alzheimer's stigma: A vignette-based experiment," Social Science & Medicine, Elsevier, vol. 143(C), pages 117-127.
    6. Berry, Brandon & Apesoa-Varano, Ester Carolina & Gomez, Yarin, 2015. "How family members manage risk around functional decline: The autonomy management process in households facing dementia," Social Science & Medicine, Elsevier, vol. 130(C), pages 107-114.
    7. Maya Maor & Moflah Ataika & Pesach Shvartzman & Maya Lavie Ajayi, 2021. "“I Had to Rediscover Our Healthy Food”: An Indigenous Perspective on Coping with Type 2 Diabetes Mellitus," IJERPH, MDPI, vol. 19(1), pages 1-16, December.
    8. Rebecca J Bartlett Ellis & Janet L Welch, 2017. "Medication‐taking behaviours in chronic kidney disease with multiple chronic conditions: a meta‐ethnographic synthesis of qualitative studies," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(5-6), pages 586-598, March.
    9. Yu‐Ting Chang & Mark Hayter & Shu‐Chen Wu, 2010. "A systematic review and meta‐ethnography of the qualitative literature: experiences of the menarche," Journal of Clinical Nursing, John Wiley & Sons, vol. 19(3‐4), pages 447-460, February.
    10. Eleri Jones & Ernestina Coast, 2013. "Social relationships and postpartum depression in South Asia: A systematic review," International Journal of Social Psychiatry, , vol. 59(7), pages 690-700, November.
    11. Hansen, Henrik & Trifkovic, Neda, 2013. "Systematic Reviews: Questions, Methods and Usage," MPRA Paper 47993, University Library of Munich, Germany.
    12. Best, Paul & Manktelow, Roger & Taylor, Brian, 2014. "Online communication, social media and adolescent wellbeing: A systematic narrative review," Children and Youth Services Review, Elsevier, vol. 41(C), pages 27-36.
    13. Oya, Carlos & Schaefer, Florian & Skalidou, Dafni, 2018. "The effectiveness of agricultural certification in developing countries: A systematic review," World Development, Elsevier, vol. 112(C), pages 282-312.
    14. Shisei Tei & Junya Fujino, 2022. "Social ties, fears and bias during the COVID-19 pandemic: Fragile and flexible mindsets," Palgrave Communications, Palgrave Macmillan, vol. 9(1), pages 1-7, December.
    15. Khan, Imran & Kabir, Zobaidul, 2020. "Waste-to-energy generation technologies and the developing economies: A multi-criteria analysis for sustainability assessment," Renewable Energy, Elsevier, vol. 150(C), pages 320-333.
    16. Carles Campanyà & David Fonseca & Daniel Amo & Núria Martí & Enric Peña, 2021. "Mixed Analysis of the Flipped Classroom in the Concrete and Steel Structures Subject in the Context of COVID-19 Crisis Outbreak. A Pilot Study," Sustainability, MDPI, vol. 13(11), pages 1-20, May.
    17. Helle Feddersen & Tine Mechlenborg Kristiansen & Pernille Tanggaard Andersen & Kim Hørslev‐Petersen & Jette Primdahl, 2017. "Construction of meaningful identities in the context of rheumatoid arthritis, motherhood and paid work: A meta‐ethnography," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(23-24), pages 4117-4128, December.
    18. Clare, Linda & Rowlands, Julia & Bruce, Errollyn & Surr, Claire & Downs, Murna, 2008. "'I don't do like I used to do': A grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care," Social Science & Medicine, Elsevier, vol. 66(11), pages 2366-2377, June.
    19. McNeil, Ryan & Small, Will, 2014. "‘Safer environment interventions’: A qualitative synthesis of the experiences and perceptions of people who inject drugs," Social Science & Medicine, Elsevier, vol. 106(C), pages 151-158.
    20. Langdon, Shani A. & Eagle, Andrew & Warner, James, 2007. "Making sense of dementia in the social world: A qualitative study," Social Science & Medicine, Elsevier, vol. 64(4), pages 989-1000, February.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:plo:pmed00:1001331. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: plosmedicine (email available below). General contact details of provider: https://journals.plos.org/plosmedicine/ .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.