Feeling valued versus abandoned: Voices of persons who have completed a cognitive assessment.
cognitive assessment
cognitive impairment
dementia
experiences
mild
neuropsychiatric symptoms
Journal
International journal of older people nursing
ISSN: 1748-3743
Titre abrégé: Int J Older People Nurs
Pays: England
ID NLM: 101267281
Informations de publication
Date de publication:
Nov 2021
Nov 2021
Historique:
revised:
28
05
2021
received:
28
02
2021
accepted:
11
06
2021
pubmed:
8
7
2021
medline:
16
11
2021
entrez:
7
7
2021
Statut:
ppublish
Résumé
To describe older persons' experiences of a cognitive assessment and possible neuropsychiatric symptoms [NPS] related to a neurocognitive diagnosis. A cognitive assessment in primary care is offered to persons with suspected dementia with subsequent referral to a specialist clinic if required. The assessment process, with the likelihood of receiving a dementia diagnosis, is surrounded by uncertainty with long waiting times. Although NPS are common among persons with cognitive impairment persons are not routinely asked about these symptoms during a cognitive assessment. Interviews were held with 18 participants who had completed a cognitive assessment. The Neuropsychiatric Inventory [NPI] was incorporated into one of the interview questions enabling participants to self-report NPS, if present. Interview data were analysed using Interpretive Description. Two main themes were identified: a matter of trust and making sense of a cognitive diagnosis. Experiences of the assessment process ranged from feeling valued to abandoned with variations of trust in the process. A diagnosis of mild cognitive impairment was experienced as an abstract diagnosis devoid of follow-up support. A lack of preparedness for the assessment existed among participants. Some experienced the process as standardised. One half of participants self-reported the presence of one to four NPS, regardless of neurocognitive diagnosis. Irritability and depression were most common NPS identified. Experiences of a cognitive assessment varied from feeling valued by society to abandoned in the absence of follow-up support. The assessment was viewed as a standardised procedure failing to see the person behind the testing. Diagnosis disclosure conversations were experienced as diffuse with participants unprepared for a dementia diagnosis. The NPI enabled participants to identify and report the presence of NPS which otherwise could go undetected during the cognitive assessment, impacting on the person's well-being and daily life.
Sections du résumé
AIM
OBJECTIVE
To describe older persons' experiences of a cognitive assessment and possible neuropsychiatric symptoms [NPS] related to a neurocognitive diagnosis.
BACKGROUND
BACKGROUND
A cognitive assessment in primary care is offered to persons with suspected dementia with subsequent referral to a specialist clinic if required. The assessment process, with the likelihood of receiving a dementia diagnosis, is surrounded by uncertainty with long waiting times. Although NPS are common among persons with cognitive impairment persons are not routinely asked about these symptoms during a cognitive assessment.
METHOD
METHODS
Interviews were held with 18 participants who had completed a cognitive assessment. The Neuropsychiatric Inventory [NPI] was incorporated into one of the interview questions enabling participants to self-report NPS, if present. Interview data were analysed using Interpretive Description.
RESULTS
RESULTS
Two main themes were identified: a matter of trust and making sense of a cognitive diagnosis. Experiences of the assessment process ranged from feeling valued to abandoned with variations of trust in the process. A diagnosis of mild cognitive impairment was experienced as an abstract diagnosis devoid of follow-up support. A lack of preparedness for the assessment existed among participants. Some experienced the process as standardised. One half of participants self-reported the presence of one to four NPS, regardless of neurocognitive diagnosis. Irritability and depression were most common NPS identified.
CONCLUSIONS
CONCLUSIONS
Experiences of a cognitive assessment varied from feeling valued by society to abandoned in the absence of follow-up support. The assessment was viewed as a standardised procedure failing to see the person behind the testing. Diagnosis disclosure conversations were experienced as diffuse with participants unprepared for a dementia diagnosis. The NPI enabled participants to identify and report the presence of NPS which otherwise could go undetected during the cognitive assessment, impacting on the person's well-being and daily life.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e12403Informations de copyright
© 2021 The Authors. International Journal of Older People Nursing published by John Wiley & Sons Ltd.
Références
Abley, C., Manthorpe, J., Bond, J., Keady, J., Samsi, K., Campbell, S., Watts, S., & Robinson, L. (2013). Patients’ and carers’ views on communication and information provision when undergoing assessments in memory services. Journal of Health Services Research & Policy, 18(3), 167-173.
Alzheimer's Association (2018). Alzheimer's disease facts and figures. Alzheimer’s Dementia, 14(3), 367-429. https://doi.org/10.1016/10.1016/j.jalz.2018.02.001
Bakan, D. (1966). The duality of human existence: An essay on psychology and religion. Rand McNally.
Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C., & Bond, J. (2004). Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry, 19(2), 151-169.
Bartlett, R., Gjernes, T., Lotherington, A. T., & Obstefelder, A. (2018). Gender, citizenship and dementia care: A scoping review of studies to inform policy and future research. Health & Social Care in the Community, 26(1), 14-26.
Begum, A., Morgan, C., Chiu, C., Tylee, A., & Stewart, R. (2012). Subjective memory impairment in older adults: aetiology, salience and help seeking. International Journal of Geriatric Psychiatry, 27(6), 621-720.
Bielsten, T., Lasrado, R., Keady, J., Kullberg, A., & Hellström, I. (2018). Living Life and Doing Things Together: Collaborative Research with couples where one partner has a diagnosis of Dementia. Qualitative Health Research, 28(11), 1719-1734.
Birt, L., Poland, F., Charlesworth, G., Leung, P., & Higgs, P. (2019). Relational experiences of people seeking help and assessment for subjective cognitive concern and memory loss. Aging Mental Health, 27, 1-9.
Borson, S., Frank, L., Bayley, P. J., Boustani, M., Dean, M., Lin, P. J., Riley McCarten, J., Morris, J. C., Salmon, D. P., Schmitt, F. A., Stefanacci, R. G., Mendiondo, M. S., Peschin, S., Hall, E. J., Fillit, H. & Ashford, J. W. (2013). Improving dementia care: the role of screening and detection of cognitive impairment. Alzheimers Dementia, 9(2), 151-159.
Boustani, M., Perkins, A. J., Fox, C., Unverzagt, F., Austrom, M. G., Fultz, B., Hui, S., Callahan, C. M., & Hendrie, H. C. (2006). Who refuses the diagnostic assessment for dementia in primary care? International Journal of Geriatric Psychiatry, 21, 556-563.
Boustani, M., Sachs, G., & Callahan, C. M. (2007). Can primary care meet the biopsychosocial needs of older adults with dementia? Journal of General Internal Medicine, 22(11), 1625-1627.
Braun, A., Trivedi, D. P., Dickinson, A., Hamilton, L., Goodman, C., Gage, H., Ashaye, K., Iliffe, S. & Manthorpe, J. (2019). Managing behavioural and psychological symptoms in community dwelling older people with dementia: 2. A systematic review of qualitative studies. Dementia (London, England), 18(7-8), 2950-2970.
Brown, A., & Draper, P. (2003). Accommodative speech and terms of endearment: Elements of a language mode often experienced by older adults. Journal of Advanced Nursing, 41(1), 15-21.
Campbell, C., Manthorpe, J., Samsi, K., Abley, C., Robinson, L., Watts, S., Bond, J., & Keady, J. (2016). Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia. Journal of Aging Studies, 37, 40-47.
Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. B. (2012). Behavioral and psychological symptoms of dementia. Frontiers in Neurology, 2, 73. https://doi.org/10.3389/fneur.2012.00073
Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A., & Gornbein, J. (1994). The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44(12), 2308-2314.
Dhedhi, S. A., Swinglehurst, D., & Russell, J. (2014). ‘Timely’ diagnosis of dementia: what does it mean? A narrative analysis of GPs’ accounts. British Medical Journal Open, 4(3), e004439. https://doi.org/10.1136/bmjopen-2013-004439
Diehl, M., Owen, S. K., & Youngblade, L. M. (2004). Agency and communion attributes in adult's spontaneous self-representations. International Journal of Behavioral Development, 28(1), 1-15.
Dubois, B., Padovani, A., Scheltens, P., Rossi, A., & Dell’Agnello, G. (2016). Timely diagnosis for Alzheimer’s Disease: A literature review on benefits and challenges. Journal of Alzheimers Disease, 49(3), 617-631.
Folstein, M., Folstein, S. E., & McHugh, P. (1975). “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198.
Frederiksen, K. S., Nielsen, T. R., Winblad, B., Schmidt, R., Kramberger, M. G., Jones, R. W., Hort, J., Grimmer, T., Georges, J., Frölich, L., Engelborghs, S., Dubois, B. & Waldemar, G. (2020). European Academy of Neurology/European Alzheimer’s Disease Consortium position statement on diagnostic disclosure, biomarker counselling, and management of patients with mild cognitive impairment. European Journal of Neurology, 28(7), 2147-2155.
Gallagher, D., Fischer, C. E., & Iaboni, A. (2017). Neuropsychiatric symptoms in mild cognitive impairment. Canadian Journal of Psychiatry, 62(3), 161-169.
Grill, J. D., Apostolova, L. G., Bullain, S., Burns, J. M., Cox, C. G., Dick, M., Hartley, D., Kawas, C., Kremen, S., Lingler, J., Lopez, O. L., Mapstone, M., Pierce, A., Gil Rabinovici, J., Roberts, S., Sajjadi, S. A., Teng, E. & Karlawish, J. (2017). Communicating mild cognitive impairment diagnoses with and without amyloid imaging. Alzheimer's Research & Therapy, 9, 35.
Guss, R., La Fontaine, J., Buckell, A., Knibbs, T., & Palfrey, M. (2017). Clinical psychology in the early stage dementia care pathway. British Psychology Society. Division of Clinical Psychology. January. Retrieved July, 2019: https://www1.bps.org.uk/system/files/user-files/Division%20of%20Clinical%20Psychology/public/INF270%20Early%20stage%20dementia%20ID115%20web.pdf
Hedman, R., Hansebo, G., Ternestedt, B. M., Hellström, I., & Norberg, A. (2016). 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), 421-443.
Hellström, I., & Torres, S. (2013). A wish to know but not always tell - couples living with dementia talk about disclosure preferences. Aging & Mental Health, 17(2), 157-167.
Hill, N. L., Mogle, J., Wion, R., Munoz, E., DePasquale, N., Yevchak, A. M., & Parisi, J. M. (2016). Subjective cognitive impairment and affective symptoms: A systematic review. The Gerontologist, 56, 109-127.
Hydén, L. C. (2011). Narrative collaboration and scaffolding in dementia. Journal of Aging Studies, 25, 339-347.
Iliffe, S., Manthorpe, J., & Eden, A. (2003). Sooner or later? Issues in the early diagnosis of dementia in general practice: A qualitative study. Family Practice, 20(4), 376-381.
Jacobs, G., van Lieshout, F., Borg, M., & Ness, O. (2017). Being a person-centred researcher: Principles and methods for doing research in a person-centred way. In B. McCormack, S. van Dulmen, H. Eide, K. Skovdahl, & T. Eide (Eds.), Person-centred healthcare research (pp. 51-60). Wiley-Blackwell.
Kelly, F., & Innes, A. (2016). Facilitating independence: The benefits of a post-diagnostic support project for people with dementia. Dementia, 15(2), 162-180.
Kitwood, T. (1997). Dementia reconsidered: The person comes first. Open University Press.
Korhonen, K., Einiö, E., Leinonen, T., Tarkiainen, L., & Martikainen, P. (2020). Midlife socioeconomic position and oldage dementia mortality: a large prospective register-based study from Finland. British Medical Journal Open, 10, e033234.
Livingston, G., Baio, G., Sommerlad, A., de Lusignan, S., Poulimenos, S., Morris, S., Rait, G., & Hoe, J. (2017). Effectiveness of an intervention to facilitate prompt referral to memory clinics in the United Kingdom: Cluster randomized controlled. PLoS Medicine, 14(3), e1002252.
Lövheim, H., Sandman, P. O., Karlsson, S., & Gustafson, Y. (2008). Behavioral and psychological symptoms of dementia in relation to level of cognitive impairment. International Psychogeriatrics, 20(4), 777-789.
Lyketsos, C. G., Carrillo, M. C., Ryan, J. M., Khachaturian, A. S., Trzepacz, P., Amatniek, J., Cedarbaum, J., Brashear, R., & Miller, D. S. (2011). Neuropsychiatric symptoms in Alzheimer's disease. Alzheimer's & Dementia, 7(5), 532-539.
Magierski, R., Sobow, T., Schwertner, E., & Religa, D. (2020). Pharmacotherapy of behavioural and psychological symptoms of dementia: state of the art and future progress. Frontiers in Pharmacology, 11, 1168.
Manthorpe, J., Samsi, K., Campbell, S., Abley, C., Keady, J., Bond, J., Watts, S., Robinson, L., Warner, J., & Iliffe, S. (2013). From forgetfulness to dementia: Clinical and commissioning implications of diagnostic experiences. British Journal of Medical Practice, 63(606), e69-e75.
McCormack, B., & McCance, T. (2010). Person-Centred Nursing. Theory and practice. Wiley-Blackwell.
McCormack, B., McCance, T., & Klopper, H. (2017). Person-centred practice in nursing and health care: Theory and practice (2nd edn). Wiley Blackwell.
McGreevy, J. (2015). Dementia and the person-centred care approach. Nursing Older People, 27(8), 27-31.
Morley, J. E., Morris, J. C., Berg-Weger, M., Borson, S., Carpenter, B. D., del Campo, N., Dubois, B., Fargo, K., Fitten, L. J., Flaherty, J. H., Ganguli, M., Grossberg, G. T., Malmstrom, T. K., Petersen, R. D., Rodriguez, C., Saykin, A. J., Scheltens, P., Tangalos, E. G., Verghese, J., … Vellas, B. (2015). Brain Health: the importance of recognizing cognitive impairment: An IAGG consensus conference. Journal of the American Medical Directors Association, 16(9), 731-739.
Mortby, M. E., Burns, R., Eramudugolla, R., Ismail, Z., & Anstey, K. J. (2017). Neuropsychiatric symptoms and cognitive impairment: Understanding the importance of co-morbid symptoms. Journal of Alzheimer’s Disease, 59, 141-153.
Mukherjee, A., Biswas, A., Roy, A., Biswas, S., Gangopadhyay, G., & Das, S. (2017). Behavioural and psychological symptoms of dementia: correlates and impact on caregiver distress. Dementia and Geriatric Cognitive Disorders Extra, 7(3), 354-365.
National Board of Health and Welfare [NBHW] (2017). Nationella riktlinjer för vård och omsorg vid demenssjukdom: Stöd för styrning och ledning. Socialstyrelsen. 15s. FULLTEXT: https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/nationella-riktlinjer/2017-12-2.pdf
National Institute for Health and Clinical Excellence [NICE] (2018). Dementia report UK. Retrieved: Dementia: assessment, management and support for people living with dementia and their carers. FULLTEXT: https://www.nice.org.uk/guidance/ng97/chapter/Recommendations#diagnosis
Okura, T., & Langa, K. M. (2011). Caregiver burden and neuropsychiatric symptoms in older adults with cognitive impairment: Aging, Demographics, and Memory Study (ADAMS). Alzheimer Disease and Associated Disorders, 25(2), 116-121.
Patton, M. Q. (2015). Qualitative research and evaluation methods (4th edn). Sage.
Perry-Young, L., Owen, G., Kelly, S., & Owens, C. (2018). How people come to recognise a problem and seek medical help for a person showing early signs.
Polit, D. F., & Beck, C. T. (2017). Nursing research generating and assessing evidence for nursing practice (10th edn). Wolters Kluwer.
Poyser, C. A., & Tickle, A. (2019). Exploring the experience of the disclosure of a dementia diagnosis from a clinician, patient and carer perspective: a systematic review and Meta-ethnographic synthesis. Aging and Mental Health, 23(12), 1605-1615.
Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M., & Karagiannidou, M. (2016). World Alzheimer Report 2016. Improving healthcare for people living with dementia coverage, quality and costs now and in the future. Alzheimer`s Disease International.
Robinson, L., Gemski, A., Abley, C., Bond, J., Keady, J., Campbell, S., Samsi, K., & Manthorpe, J. (2011). The transition to dementia - individual and family experiences of receiving a diagnosis: A review. International Psychogeriatrics, 23(27), 1026-1043.
Robinson, S. M., Canavan, M., & O’Keeffe, S. T. (2014). Preferences of older people for early diagnosis and disclosure of Alzheimer’s disease (AD) before and after considering potential risks and benefits. Archives of Gerontology & Geriatrics, 59(3), 607-612.
Rolinski, M., Fox, C., Maidment, I., & McShane, R. (2012). Cholinesterase inhibitors for dementia with Lewy bodies, Parkinson's disease dementia and cognitive impairment in Parkinson's disease. Cochrane Database of Systematic Reviews, (3), CD006504. https://doi.org/10.1002/14651858.CD006504.pub2
Rosenberg, A., Ngandu, T., Rusanen, M., Antikainen, R., Bäckman, L., Havulinna, S., Hänninen, T., Laatikainen, T., Lehtisalo, J., Levälahti, E., Lindström, J., Paajanen, T., Peltonen, M., Soininen, H., Stigsdotter-Neely, A., Strandberg, T., Tuomilehto, J., Solomon, A. & Kivipelto, M. (2018). Multidomain lifestyle intervention benefits a large elderly population at risk for cognitive decline and dementia regardless of baseline characteristics: The FINGER trial. Alzheimer's & Dementia: the Journal of the Alzheimer's Association, 14(3), 263-270.
Sabat, S. (2019). Dementia beyond pathology: What people diagnosed can teach us about our shared humanity. Journal of Bioethical Inquiry, 16(2), 163-172.
Samsi, K., Abley, C., Campbell, S., Keady, J., Manthorpe, J., Robinson, L., Watts, S., & Bond, J. (2014). Negotiating a labyrinth: Experiences of assessment and diagnostic journey in cognitive impairment and dementia. International Journal of Geriatric Psychiatry, 29(1), 58-67.
Shankar, K. N., Hirschman, K. B., Hanlon, A. L., & Naylor, M. D. (2014). Burden in caregivers of cognitively impaired elderly adults at time of hospitalization: A cross-sectional analysis. Journal of the American Geriatrics Society, 62(2), 276-284.
Stormoen, S., Tallberg, I. M., Almkvist, O., Eriksdotter, M., & Sundström, E. (2017). Decisions and attitudes regarding participation and proxy in clinical trials among patients with impaired cognitive function. Dementia, 18(6), 2049-2061.
Tchalla, A., Clément, J.-P., Saulnier, I., Beaumatin, B., Lachal, F., Gayot, C., Bosetti, A., Desormais, I., Perrochon, A., Preux, P.-M., Couratier, P., & Dantoine, T. (2018). Predictors of rapid cognitive decline in patients with mild-to-moderate Alzheimer disease: A prospective cohort study with 12-month follow-up performed in memory clinics. Dementia and Geriatric Cognitive Disorders, 45(1-2), 56-65.
Thies, W., & Bleiler, L. (2012). There is no cure at present for Alzheimer´s disease and other related types of dementia. Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 8, 131-168.
Thorne, S. (2016). Interpretive description, qualitative research for applied practice (2nd edn). Routledge.
Toot, S., Swinson, T., Devine, M., Challis, D., & Orrell, M. (2017). Causes of nursing home placement for older people with dementia: A systematic review and meta-analysis. International Psychogeriatrics, 29(2), 195-208.
Tyrrell, M., Religa, D., Fossum, B., Hedman, R., Skovdahl, K., & Hillerås, P. (2021). Embarking on a memory assessment voices of older persons living with memory impairment. Dementia (London), 20(2), 717-733.
Van Den Wijngaart, M. A. G., Vernooij-Dassen, M. J. F. J., & Felling, A. J. A. (2007). The influence of stressors, appraisal and personal conditions on the burden of spousal caregivers of persons with dementia. Aging & Mental Health, 11(6), 626-636.
Vik-Mo, A. O., Giil, L. M., Ballard, C., & Aarsland, D. (2018). Course of neuropsychiatric symptoms in dementia: 5-year longitudinal study. International Journal of Geriatric Psychiatry, 33(10), 1361-1369.
Waldemar, G., Phung, K. T. T., Burns, A., Georges, J., Hansen, F. R., Iliffe, S., Marking, C., Rikkert, M. O., Selmes, J., Stoppe, G., & Sartorius, N. (2007). Access to diagnostic evaluation and treatment for dementia in Europe. International Journal of Geriatric Psychiatry, 22, 47-54.
Watson, R., Bryant, J., Sanson-Fisher, R., Mansfield, E., & Evans, T. J. (2018). What is a ‘timely’ diagnosis? Exploring the preferences of Australian health service consumers regarding when a diagnosis of dementia should be disclosed. BMC Health Services Research, 18, 612.
World Medical Association (2013). Declaration of Helsinki: Ethical principles for medical research involving human subjects. JAMA, 310(20), 2191-2194. Laura Fratiglioni, Hui-Xin Wang, Kjerstin Ericsson, Margaret Maytan, Bengt Winblad
Xanthropoulou, P., & McCabe, R. (2019). Subjective experiences of cognitive decline and receiving a diagnosis of dementia: qualitative interviews with people recently diagnoses in memory clinics in the UK. British Medical Journal Open, 9, e026071.