The experiential impact of cognitive function tests upon men with dementia and their carers

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1 The experiential impact of cognitive function tests upon men with dementia and their carers Dr Edward Tolhurst Lecturer in Health Research 5 th November 2015

2 Research overview Qualitative study into the experience of living with dementia An exploration of the negotiation of relationships and care Spousal and broader family relationships Seeking perspectives on the diagnosis, and professional support being accessed/sought Men with dementia and their spousal carers

3 Cognitive function tests A contributory resource available to the clinician when diagnosing and monitoring dementia o Mini-mental state examination (MMSE) o Montreal Cognitive Assessment (MoCA) o Clock-drawing test Enables examination of factors such as shortterm and long-term memory, concentration and language

4 Background Substantial attention has been granted to the efficacy of tests (their reliability and validity) Less attention paid to their experiential impacts Following cognitive testing, distress was present in 70% of a sample of 154 patients with Alzheimer s disease (Lai et al, 2008). Shame and disbelief experienced during the testing process (Beard, 2005).

5 Methodology Semi-structured joint interview approach: both members of couple interviewed together 14 couples: men with dementia and their spousal carers Narrative thematic approach (Riessman, 2008) No direct question was presented on cognitive function tests

6 Themes Experiential impacts of cognitive function tests were raised in interviews with 10 out of the 14 couples Key sub-themes: Questioning the validity of tests Impacting on self-worth Shaping perceptions of carers Indicating a lack of person-centred support

7 Questioning the validity of tests Carers queried the accuracy of tests, e.g. The test would not capture declining function as the man was good at tests (used to be a psychology teacher) The test could overstate decline as the man is more practically oriented Test outcomes are affected by a range of factors, such as prior educational attainment This needs to be cascaded to the site of the intervention

8 I don t think even at the top of his mental ability, they were things that he could have done, he just didn t have that processing sort of capability [...] That s what slightly worries me about the diagnostic side of things, that you think, is it that he never had the skill. (Florence)

9 Impacting on self-worth Enduring skills and competence are of key importance to men with dementia Cognitive function tests present a challenge to this sense of competence High scores were also drawn upon to reinforce self-worth Generates a precarious position where esteem is associated with a score likely to decline

10 They gave me tests and for the first couple of, the first two or three tests I really struggled [...] I was really struggling and felt embarrassed about struggling. But the girls that have come out to me [...] they ve put me on different tests and as I work through the tests I ve got better and better at working out the tests. In fact the last test I had I think I got 34 out of 35. (David)

11 Personhood cognitive testing can be very upsetting for the person concerned. It reveals the person s problems in a stark way (Hughes, 2011:88) Brain scans also reveal the impact of dementia in a stark way, but were discussed in neutral terms by men with dementia Cognitive function tests intersect with the domain of personhood

12 Shaping perceptions of carers There is a tendency to focus on the discrete total offered by the test This label offers a means to make sense of the person s condition Could shape the person with dementia s experiential conditions Malignant positioning (Sabat, 2001)

13 About every six months he goes back [to the hospital]. And they do the memory test. Because the last time we were quite thrilled weren t we, because he got 26 out of 30. So he s better. But he s still on his medication. (Sally) Robert has been to the memory clinic and had a memory test. I know that our friend was 19 out of 30 and I d always said that Robert would be worse and he was. He was 16 out of 30 which is very bad. (Rachel)

14 Indicating a lack of person-centred support Lack of broader input could lead to cognitive function tests being viewed as the central component of professional input Manthorpe et al (2013) found that those undergoing assessments did not experience them as patient-centred

15 They don t do anything. We just go once a year, and they ask you to spell world backwards or something trivial like that. But when the girls used to come out to him, Jackie [health professional] used to come, oh he loved Jackie. She used to come and have a cup of tea with him and it was lovely and he related to Jackie. (Irene)

16 Conclusion & Recommendations Hopes, self-esteem and concerns can become anchored to the discrete scores from testing Requirement to provide more information on the nature and purpose of tests (Keady & Gilliard, 2002) Tests focused more on day-to-day functioning could evaluate the impacts of dementia without placing such direct scrutiny on narrow cognitive performance (Sabat, 2001)

17 References Beard, R. (2005) Managing memory loss: how early diagnosis impacts individuals being diagnosed. Alzheimer's & Dementia: The Journal of the Alzheimer's Association, vol. 1, no.1, S20. Hughes, J.C. (2011). Alzheimer s and other dementias. Oxford: Oxford University Press. Keady J. & Gilliard, J. (2002) Testing times: the experience of neuropsychological assessment for people with suspected Alzheimer s disease, in Harris, P.B. (Ed.), The Person with Alzheimer s Disease: pathways to understanding the experience (pp. 3-28). Baltimore, MD: The John Hopkins University Press. Lai J.M et al. (2008) Self-reported distress after cognitive testing in patients with Alzheimer's disease. The Journals of Gerontology, Series A. Biological Sciences and Medical Sciences, vol.63, no.8, pp

18 Manthorpe, J. et al (2013) From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences. The British Journal of General Practice, 63(606): e69-e75. Riessman, C.K. (2008) Narrative methods for the human sciences. London: Sage. Sabat, S.R. (2001) The experience of Alzheimer s disease: life through a tangled veil. Oxford: Blackwell Tolhurst, E. (2015) The experiential impacts of cognitive function tests upon men with dementia and their spousal carers. Journal of New Writing in Health & Social Care, 2(1): [forthcoming]

The experiential impacts of cognitive function tests upon men with dementia and their carers

The experiential impacts of cognitive function tests upon men with dementia and their carers Edward Tolhurst School of Social Work, Allied and Public Health, Faculty of Health Sciences, Staffordshire University