Skip to main content
SpringerLink
Log in
Book cover

Handbook of Qualitative Health Research for Evidence-Based Practice pp 277–289Cite as

Qualitative Evidence in Working with Cognitively Impaired Older Adults

  • Chapter

  • 3895 Accesses

Part of the book series: Handbooks in Health, Work, and Disability ((SHHDW,volume 4))

Abstract

With the growing prevalence of dementia around the world has come a corresponding increase in the number of scientific investigations into late life cognitive disorders. In addition to fundamental inquiries about the etiology, diagnosis, and treatment of these disorders, there has been a marked increased in qualitative studies designed to understand subjective experience of cognitively impaired individuals and their family members. This objective of this chapter is to provide an overview of the current body of qualitative literature on cognitive impairment in four areas: (1) cognitive impairment and existential issues; (2) the diagnostic process and its impact; (3) functional impact; and (4) cognitive impairment and comorbid medical conditions. Synthesis of findings from 53 studies reveals that the experience and impact of living with late life cognitive impairment varies by contextual factors and stage of the illness, and may be influenced by encounters with health professionals. Implications for practice are provided with an emphasis on holistic and person-centered approaches to dementia care.

This is a preview of subscription content, log in via an institution.

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   189.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   249.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD   329.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

References

  • Adler, G. (2010). Driving decision-making in older adults with dementia. Dementia, 9(1), 45–60.

    Article  Google Scholar 

  • Alzheimer’s Disease International. (2009). Alzheimer’s Disease International World Alzheimer Report. London, UK: Alzheimer’s Disease International.

    Google Scholar 

  • Aminzadeh, F., Byszewski, A., Molnar, F. J., & Eisner, M. (2007). Emotional impact of dementia diagnosis: Exploring persons with dementia and caregivers’ perspectives. Aging and Mental Health, 11(3), 281–290.

    Article  PubMed  Google Scholar 

  • Bakker, C., de Vugt, M. E., Vernooij-Dassen, M., van Vliet, D., Verhey, F. R., & Koopmans, R. T. (2010). Needs in early onset dementia: A qualitative case from the NeedYD study. American Journal of Alzheimer’s Disease and Other Dementias, 25(8), 634–640.

    Article  PubMed  Google Scholar 

  • Banerjee, S., Willis, R., Graham, N., & Gurland, B. J. (2010). The Stroud/ADI dementia quality framework: A cross-national population-level framework for assessing the quality of life impacts of services and policies for people with dementia and their family careers. International Journal of Geriatric Psychiatry, 25(3), 249–257.

    Article  PubMed  Google Scholar 

  • Beuscher, L., & Grando, V. T. (2009). Using spirituality to cope with early stage Alzheimer’s disease. Western Journal of Nursing Research, 31(5), 583–599.

    Article  PubMed  PubMed Central  Google Scholar 

  • Brittain, K., Corner, L., Robinson, L., & Bond, J. (2010). Ageing in place and technologies of place: The lived experience of people with dementia in changing social, physical and technological environments. Sociology of Health & Illness, 32(2), 272–287.

    Article  Google Scholar 

  • Byszewski, AM, Molnar, FJ, Aminzadeh, D., Eisner, M., Gardezi, F., Bassett, R. (2007). Dementia diagnosis disclosure: a study of patient and caregiver perspectives. Alzheimer Disease and Associated Disoders, 21, 107–14.

    Google Scholar 

  • Byszewski, A., Molnar, F., & Aminzadeh, F. (2010). The impact of disclosure of unfitness to drive in persons with newly diagnosed dementia: Patient and caregiver perspectives. Clinical Gerontologist, 33(2), 152–163.

    Article  Google Scholar 

  • Cahill, S., Begley, E., Topo, P., Saarikalle, K., Macijauskiene, J., Budraitiene, A., et al. (2004). “I know where this is going and I know it won’t go back”: Hearing the individual's voice in dementia quality of life assessments. Dementia, 3(3), 313–330.

    Article  Google Scholar 

  • Cahill, S., Gibb, M., Bruce, I., Headon, M., & Drury, M. (2008). “I was worried coming in because I don’t really know why it was arranged”: The subjective experience of new patients and their primary caregivers attending a memory clinic. Dementia, 7(2), 175–189.

    Article  Google Scholar 

  • Chang, E., Daly, J., Johnson, A., Harrison, K., Easterbrook, S., Bidewell, J., et al. (2009). Challenges for professional care of advanced dementia. International Journal of Nursing Practice, 15(1), 41–47.

    Article  PubMed  Google Scholar 

  • Clare, L. (2003). Managing threats to self-awareness in early stage Alzheimer’s disease. Social Science and Medicine, 57(6), 1017–1029.

    Article  PubMed  Google Scholar 

  • De Vriendt, P., Gorus, E., Cornelis, E., Velghe, A., Petrovic, M., & Mets, T. (2012). The process of decline in advanced activities of daily living: A qualitative explorative study in mild cognitive impairment. International Psychogeriatrics, 24(6), 974–986.

    Article  PubMed  Google Scholar 

  • Derksen, E., Vernooij-Dassen, M., Gillissen, F., Olde Rikkert, M., & Scheltens, P. (2006). Impact of diagnostic disclosure in dementia on patients and careers: Qualitative case series analysis. Aging and Mental Health, 10, 525–531.

    Article  PubMed  Google Scholar 

  • Dobbs, B., Harper, L., & Wood, A. (2009). Transitioning from driving to driving cessation: The role of specialized driving cessation support groups for individuals with dementia. Topics in Geriatric Rehabilitation, 25(1), 73–86.

    Article  Google Scholar 

  • Drennan, V. M., Cole, L., & Iliffe, S. (2011). A taboo within a stigma? A qualitative study of managing incontinence with dementia living at home. BMC Geriatrics, 11, 75.

    Article  PubMed  PubMed Central  Google Scholar 

  • Edvardsson, D., Fetherstonhaugh, D., & Nay, R. (2009). Promoting a continuation of self and normality: Person-centred care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing, 19, 2611–2618.

    Article  Google Scholar 

  • Edvardsson, D., & Nordvall, K. (2008). Lost in the present but confident of the past: Experiences of being in a psycho-geriatric unit as narrated by persons with dementia. Journal of Clinical Nursing, 17(4), 491–498.

    PubMed  Google Scholar 

  • Erlen, J. A., Lingler, J., Sereika, S. M., Tamres, L. K., Happ, M. B., & Tang, F. (2013). Characterizing caregiver-mediated medication management in patients with memory loss. Journal of Gerontological Nursing, 39(4), 30–39.

    Article  PubMed  PubMed Central  Google Scholar 

  • Fazio, S., & Mitchell, D. (2009). Persistence of self in individuals with Alzheimer’s disease. Dementia, 8(1), 39–59.

    Article  Google Scholar 

  • Frank, L., Lloyd, A., Flynn, J. A., Kleinman, L., Matza, L. S., et al. (2006). Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants. International Psychogeriatrics, 18, 151–162.

    Article  PubMed  Google Scholar 

  • Gibson, R. H., Gander, P. H., & Jones, L. M. (2013). Understanding the sleep problems of people with dementia and their family caregivers. Dementia: The International Journal of Social Research and Practice. doi:10.1177/1471301212473884.

    Google Scholar 

  • Gilmore-Bykovskyi, A. L., & Bowers, B. J. (2013). Understanding nurses’ decisions to treat pain in nursing home residents with dementia. Research in Gerontological Nursing, 6(2), 127–138.

    Article  PubMed  PubMed Central  Google Scholar 

  • Hagens, C., Beaman, A., & Ryan, E. (2003). Reminiscing, poetry writing, and remembering boxes: Personhood-centered communication with cognitively impaired older adults. Activities, Adaptation & Aging, 27(3-4), 97–112.

    Article  Google Scholar 

  • Harris, P. (2006). Hearing and healing the hurts of dementia, part 1: The experience of living alone with early stage Alzheimer’s disease: What are the person’s concerns? Alzheimer’s Care Quarterly, 7(2), 84–94.

    Google Scholar 

  • Holmes, H. M., Sachs, G. A., Shega, J. W., Hougham, G. W., Cox Hayley, D., & Dale, W. (2008). Integrating palliative medicine into the care of persons with advanced dementia: Identifying appropriate medication use. Journal of the American Geriatrics Society, 56(7), 1306–1311.

    Article  PubMed  Google Scholar 

  • Johansson, L., Christensson, L., & Sidenvall, B. (2011). Managing mealtime tasks: Told by persons with dementia. Journal of Clinical Nursing, 20(17–18), 2552–2562.

    Article  PubMed  Google Scholar 

  • Jonas-Simpson, C., & Mitchell, G. (2005). Giving voice to expressions of quality of life for persons living with dementia through story, music, and art. Alzheimer’s Care Quarterly, 6(1), 52–61.

    Google Scholar 

  • Karlsson, C., Sidenvall, B., Bergh, I., & Ernsth-Bravel, M. (2012). Registered nurses’ view of pain assessment among persons with dementia as consultant advisors. Open Nursing Journal, 6, 62–70.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kitwood, T. M. (1997). Dementia reconsidered: The person comes first. Buckingham, UK: Open University Press.

    Google Scholar 

  • Langdon, S. A., Eagle, A., & Warner, J. (2007). Making sense of dementia in the social world: A qualitative study. Social Science & Medicine, 64, 989–1000.

    Article  Google Scholar 

  • Lawrence, V., Murray, J., Ffytche, D., & Banerjee, S. (2009). “Out of sight, out of mind”: A qualitative study of visual impairment and dementia from three perspectives. International Psychogeriatrics, 21(3), 511–518.

    Article  PubMed  Google Scholar 

  • Lawrence, V., Samsi, K., Banerjee, S., Morgan, C., & Murray, J. (2011a). Threat to valued elements of life: The experience of dementia across three ethnic groups. Gerontologist, 51(1), 39–50.

    Article  PubMed  Google Scholar 

  • Lawrence, V., Samsi, K., Murray, J., Harari, D., & Banerjee, S. (2011b). Dying well with dementia: Qualitative examination of end-of-life care. British Journal of Psychiatry, 199, 417–422.

    Article  PubMed  Google Scholar 

  • Leung, K. K., Finlay, J., Silvius, J. L., Koehn, S., McCleary, L., et al. (2011). Pathways to diagnosis: Exploring the experiences of problem recognition and obtaining a dementia diagnosis among Anglo-Canadians. Health and Social Care in the Community, 19, 372–381.

    Article  PubMed  Google Scholar 

  • Lingler, J. H., Nightingale, M. C., Erlen, J. A., Kane, A., Reynolds, C. F., Schulz, R., et al. (2006). Making sense of mild cognitive impairment: A qualitative exploration of the patient’s experience. The Gerontologist, 46(6), 791–800.

    Article  PubMed  Google Scholar 

  • Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson. E., et al. (2010). Making decisions for people with dementia who lack capacity: Qualitative study of family careers in UK. British Medical Journal. doi: 10.1136/bmj.c4184.

    Google Scholar 

  • MacKinlay, E., & Trevitt, C. (2010). Living in aged care: Using spiritual reminiscence to enhance meaning in life for those with dementia. International Journal of Mental Health Nursing, 19(6), 394–401.

    Article  PubMed  Google Scholar 

  • MacQuarrie, C. (2005). Experiences in early stage Alzheimer’s disease: Understanding the paradox of acceptance and denial. Aging & Mental Health, 9(5), 430–441.

    Article  Google Scholar 

  • MacRae, H. (2010). Managing identity while living with Alzheimer’s disease. Qualitative Health Research, 20, 293–305.

    Article  PubMed  Google Scholar 

  • Moyle, W., Kellett, U., Ballantyne, A., & Gracia, N. (2011). Dementia and loneliness: An Australian perspective. Journal of Clinical Nursing, 20(9–10), 1445–1453.

    Article  PubMed  Google Scholar 

  • Öhman, A., & Nygård, L. (2005). Meanings and motives for engagement in self-chosen daily life occupations among individuals with Alzheimer’s disease. Occupation, Participation & Health, 25(3), 89–97.

    Article  Google Scholar 

  • Parsons-Suhl, K., Johnson, M. E., McCann, J. J., & Solberg, S. (2008). Losing one’s memory in early Alzheimer’s disease. Qualitative Health Research, 18(1), 31–42.

    Article  PubMed  Google Scholar 

  • Preston, L., Marshall, A., & Bucks, R. S. (2007). Investigating the ways that older people cope with dementia: A qualitative study. Aging & Mental Health, 11, 131–143.

    Article  Google Scholar 

  • Qazi, A., Spector, A., & Orrell, M. (2010). User, career and staff perspectives on anxiety in dementia: A qualitative study. Journal of Affective Disorders, 125(1–3), 295–300.

    Article  PubMed  Google Scholar 

  • Rosenwax, L., McNamara, B., & Zilkens, R. (2009). A population-based retrospective cohort study comparing care for Western Australians with and without Alzheimer’s disease in the last year of life. Health & Social Care in the Community, 17(1), 36–44.

    Article  Google Scholar 

  • Russell, C., & Timmons, S. (2009). Life story work and nursing home residents with dementia. Nursing Older People, 21(4), 28–32.

    Article  PubMed  Google Scholar 

  • Schneider, J. A., Arvanitakis, Z., Leurgans, S. E., & Bennett, D. A. (2009). The neuropathology of probable Alzheimer disease and mild cognitive impairment. Annals of Neurology, 66(2), 200–208.

    Article  PubMed  PubMed Central  Google Scholar 

  • Snyder, L. (2003). Satisfactions and challenges in spiritual faith and practice for persons with dementia. Dementia, 2(3), 299–313.

    Article  Google Scholar 

  • Steeman, E., Godderis, J., Grypdonck, M., De Bal, N., & De Casterlé, B. (2007). Living with dementia from the perspective of older people: Is it a positive story? Aging & Mental Health, 11(2), 119–130.

    Article  Google Scholar 

  • Stevens, J. (2012). Stand up for dementia: Performance, improvisation and stand up comedy as therapy for people with dementia: A qualitative study. Dementia, 11(1), 61–73.

    Article  Google Scholar 

  • Svanström, R., & Dahlberg, K. (2004). Living with dementia yields a heteronomous and lost existence. Western Journal of Nursing Research, 26(6), 671–687.

    Article  PubMed  Google Scholar 

  • Tappen, R., Williams, C., Fishman, S., & Touhy, T. (1999). Persistence of self in advanced Alzheimer’s disease. Image Journal of Nursing Scholarship, 31(2), 121–125.

    Article  Google Scholar 

  • Ward-Griffin, C., Oudshoorn, A., Clark, K., & Bol, N. (2007). Mother-adult daughter relationships within dementia care: A critical analysis. Journal of Family Nursing, 13(1), 13–32.

    Article  PubMed  Google Scholar 

  • Wimo, A., & Prince, M. (2010). World Alzheimer report 2010: The global economic impact of dementia. London, UK: Alzheimer’s Disease International.

    Google Scholar 

  • Wolverson, E., Clarke, C., & Moniz-Cook, E. (2010). Remaining hopeful in early-stage dementia: A qualitative study. Aging & Mental Health, 14(4), 450–460.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. School of Nursing, University of Pittsburgh, Pittsburgh, PA, USA

    Jennifer Hagerty Lingler C.R.N.P., Ph.D. & Lu Hu R.N., M.S.N.

Authors
  1. Jennifer Hagerty Lingler C.R.N.P., Ph.D.
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Lu Hu R.N., M.S.N.
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jennifer Hagerty Lingler C.R.N.P., Ph.D. .

Editor information

Editors and Affiliations

  1. Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada

    Karin Olson

  2. Department of Educational and Counseling Psychology, and Special Education, University of British Columbia, Vancouver, British Columbia, Canada

    Richard A. Young

  3. Department of Educational and Counseling Psychology, and Special Education, University of British Columbia, Vancouver, British Columbia, Canada

    Izabela Z. Schultz

Rights and permissions

Reprints and permissions

Copyright information

© 2016 Springer Science+Business Media New York

About this chapter

Cite this chapter

Lingler, J.H., Hu, L. (2016). Qualitative Evidence in Working with Cognitively Impaired Older Adults. In: Olson, K., Young, R., Schultz, I. (eds) Handbook of Qualitative Health Research for Evidence-Based Practice. Handbooks in Health, Work, and Disability, vol 4. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-2920-7_17

Download citation

Publish with us

Policies and ethics

Search

Navigation