Alison McKinlay - PhD Candidate School of Psychology, Massey University Supervised by Professor Janet Leathem and Associate Professor Paul Merrick Presentation for the New Zealand Psychological Society conference, Nelson, 30th August, 2014. Literature on diagnosis and disclosure Purpose of the study Study methods Sample, questionnaire Study results Key findings Final practitioner comments Increased interest in early diagnosis and ethical issues – ‘Best practice’ when giving an early diagnosis? – Studies on dementia, not mild cognitive impairment (MCI) – Ongoing area of investigation in the literature – See Werner, Karnieli-Miller, & Eidelman, 2013 Diagnosis of cognitive impairment varies widely – Why? More harm than help, lack of insight, client wishes – What influences this variation in New Zealand (NZ)? Dementia vs MCI – Label of MCI varies in practice (Mitchell, Woodward, & Hirose, 2008) – Why? – Present study asked Qs mostly on cognitive impairment – More research needed focusing on MCI Identify general processes that practitioners follow when diagnosing dementia or mild cognitive impairment Identify attitudes around diagnosis disclosure What are the current practices of NZ practitioners who diagnose cognitive impairment? What factors influence the variation in practice? Ethics approval granted in 2012 by MUHEC Invitation to participate sent to:  Australia and New Zealand Society for Geriatric Medicine (ANZSGM)  The College of New Zealand Clinical Psychologists (NZCCP)  New Zealand Psychologists for Older Peoples (NZPOPs) Inclusion criteria:  Diagnosed dementia or MCI within past 12 months  Currently practising in NZ One-off anonymous online survey The questionnaire consisted of three sections: A) General demographic information B) Clinical tools involved with diagnosis Likert style/open ended E.g., ‘What information is presented to the client/family at the time of diagnosis? C) Attitudes towards the diagnosis of cognitive impairment Open ended E.g., ‘Are there any instances in which a diagnosis of cognitive impairment might not be delivered?’ Analysed using content analysis N=57 Participants mostly from: – Auckland – Wellington – Canterbury region Participants mostly worked in: – Geriatrics (36.5%) – Clinical psychology (25%) – Neuropsychology (13.5%) – Psychiatry (11.5%) Experience levels: – 15+ years (32%) – 1-5 years (24%) – 5-10 years (22%) – 10-15 years (18%) 0 10 20 30 40 50 60 Figure 1 Types of Cognitive Impairment Commonly Diagnosed Figure 2 What General Steps do Practitioners Follow when Assessing and Diagnosing Cognitive Impairment? Review Referral Information •Review referral •Discuss referral with referral source •Liaise with other professionals Review Client History •Discussion with client to obtain history •Review clients history •Obtain collateral info •Discuss with client’s family Assessment •Neuro, physical, medical assessment • Integration of results Report Writing •Produce report Provide General Feedback •Feedback with client, family •Feedback results to referrer Figure 2 What General Steps do Practitioners Follow when Assessing and Diagnosing Cognitive Impairment? Review Referral Information •Review referral •Discuss referral with referral source •Liaise with other professionals Review Client History •Discussion with client to obtain history •Review clients history •Obtain collateral info •Discuss with client’s family Assessment •Neuro, physical, medical assessment • Integration of results Report Writing •Produce report Provide General Feedback •Feedback with client, family •Feedback results to referrer Liaising with other professionals Exact process is tailored to the individual Multi- disciplinary support Liaising with other professionals Exact process is tailored to the individual Multi- disciplinary support Table 1 Which Professionals are Involved with When Reaching a Diagnosis? *All involved with providing client history, cognitive testing, support, follow up assistance **Multidisciplinary (MDT) Type of Professional Clinical psychologist* Caregivers Counsellor Case manager General practitioner* Driving assessor Geriatrician* Neurologist* Neuropsychologist* MDT staff members Nurse Occupational therapist Psychiatrist* Psychogeriatric services Psychologist* Radiologist Social worker Support workers Information Presented Always % Often % Sometimes % Never % Explanation of what cognitive impairment is 80.8 12.8 4.3 2.1 Explanation of the test results 76.6 23.4 0 0 Information on practical aspects of the condition (e.g., medication, driving) 63 30.4 6.5 0 Information on support services ** 55.8 39.5 4.7 0 ** Support services included Alzheimer's New Zealand, home support services, GP, needs assessment and service coordination agency, Age Concern, DHB, pamphlets, Parkinson's Society, support groups Table 2 Types of Information Presented to Client/Family at the Time of Diagnosis Figure 2 Factors Considered When Relaying a Diagnosis to a Client Mitchell et al Study McKinlay et al Study Label Responses % of Responses Responses % of Responses MCI 28 82 39 83 Early Alzheimer's Disease/ Dementia 1 3 5 12.5 I don’t usually relay the diagnosis 0 0 0 0 Normal ageing 0 0 1 2.6 Other 15 44 11 13 Table 3 Terms Used During Diagnosis to Label MCI * Responses in Mitchell et al. (2008) study were rated as ‘preferred’ **Responses in McKinlay et al. (in press) study were rated as being used ‘often’ Clinical practice is never clear cut! MCI, vascular dementia and Alzheimer's disease commonly diagnosed Explanation of results commonly given during diagnosis. Follow up and written info less commonly given – What do clients find most helpful? Variation in practice is necessary to suit the needs of each individual client Numerous factors influence diagnosis disclosure MCI is usually labelled directly during diagnosis, however, the label can vary according to the individual Ongoing research on MCI and diagnosis is needed “MCI and dementia are very different, and with the possibility that people with MCI return to normal cognition I think that most clinicians appreciate that a neurodegenerative diagnosis can't (and shouldn't) be given unless there are strong predictive factors present...” “I know there is a need to have more dementia diagnosed and managed in primary care. I am not clear on how primary care will be resourced to do this, as the diagnostic process is time consuming and does not fit well into 15 min consults that the patient has to seek out and pay for!” “… I would be keen to hear more from patients and families about whether early diagnosis is helpful...” Research in progress! “Minimal cognitive impairment has not reached the collective unconscious whereas dementia has…” “While making a diagnosis is important for us as it informs management/prognosis, for the patient, the label is of less value than practical strategies to address the problem and minimise the impact it has on their life” If you have any queries, my email address is A.R.McKinlay@Massey.ac.nz References: McKinlay, A.R., Leathem, J.M., & Merrick, P.L. (in press). Diagnostic processes and disclosure: a survey of practitioners diagnosing cognitive impairment. New Zealand Journal of Psychology. Mitchell, T., Woodward, M., & Hirose, Y. (2008). A survey of attitudes of clinicians towards the diagnosis and treatment of mild cognitive impairment in Australia and New Zealand. International Psychogeriatrics, 20(1), 77-85. Werner, P., Karnieli-Miller, O., & Eidelman, S. (2013). Current knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century. Alzheimer's & Dementia, 9(2), e74-88. doi:10.1016/j.jalz.2012.02.006 mailto:A.R.McKinlay@Massey.ac.nz