Acknowledgements Cathal Walsh: Senior Lecturer Statistician

1. The prevalence of Dementia and Cognitive Impairment in Dublin area Nursing Homes: The need for On-Going Assessment Dr Suzanne Cahill & Ms Ana Diaz 25th November 2009

2. Acknowledgements Cathal Walsh: Senior Lecturer Statistician Robert Coen: Senior Neuro-Psychologist Andrea Bobersky: PhD student

3. Introduction • It is suspected that like in the UK, dementia may be the core business in Irish nursing homes. • Numerous calls for a dementia audit of Irish nursing homes (Action Plan for Dementia 1999 and HSE report on Dementia 2007). • Yet absence of up to date information remains

4. Literature (I) • Internationally (USA and Europe), different estimated prevalence rates for dementia in NHs ranging from 48% to 50%, to 62%, to 68%. (Magaziner et al, 2000; Feldman et al, 2006; Matthews & Dening, 2002; MacDonald & Cooper, 2006) • Estimated prevalence of cognitive impairment in people in nursing homes also show different results from 48% to 61% to 80%. (Yap et al, 2003; Godlove Mozley, et al, 2000; Snowdon et al, 1996). • Earlier Irish studies have shown cognitive impairment prevalence rates at 58% in NH and similar rates for those in hospitals specializing in continuing care of the aged.(O’Neill et al, 1990 ; Hickey et al, 1997) • In 2007, Falconer and O’Neil estimated that there were some 14,764 people aged 65 + living in Irish NHs of whom 85% experienced a disability. Their data also suggest that large numbers may have had a CI since 58% of these residents were reported to have difficulties learning, remembering and concentrating. (Census Data 2002)

5. Literature (II) • Whilst researchers have uncovered large numbers of people with dementia living in non-specialist nursing homes, in practice, undetected dementia may also be a reality. • In the context of dementia, diagnosis is critical to drug treatments and to other service interventions. • In residential care, diagnosis and staffs’ assessment of residents’ cognitive status, is the first stage in care planning and is essential for providing optimal treatments for residents with and without dementia. • The absence of knowledge about who has a memory and cognitive problem in long stay care may also seriously compromise care services delivered and quality of life.

6. Literature (III) • The literature suggests that mild and moderate forms of dementia are more frequently overlooked than severe dementia • Low expectations of cognitive functioning and the absence of challenging behaviours, often hinder staff from recognising dementia • In one UK study, only 34% of the residents that the researchers classified as cognitively impaired were acknowledged by senior nursing staff as having dementia. In the case of residents with a severe impairment, a higher number (46.4%) was recognised • In a Danish study, staff correctly identified some 74% of the residents that had a dementia or other brain disorder. In this study, information was collected from the key carer staff

7. Summarizing: • In conclusion, international research has shown that several PwD or with CI live in non-specialist NHs, of those a good number may have no clinical diagnosis • Staff members in NHs do not easily recognise CI and dementia amongst their residents • Lack of knowledge may compromise the quality of care and QoL of PwD or CI • In Ireland, several calls for a dementia audit of NHs, however there is not up to date data available

8. Research Questions • What proportion of residents in Dublin based nursing homes have a clinical diagnosis of dementia? • Was dementia a primary reason for NH admission? • What is the prevalence of cognitive impairment amongst residents in the Dublin nursing homes surveyed? • What are DoNs perceptions of residents’ level of cognitive impairment ? • Are there differences between DoNs’ perceptions of residents’ cognitive status and impairment levels found using the MMSE?

9. Research Methods • Survey Research • Random Sample of Nursing Homes • Random Sample of Residents

10. Sample

11. Data Collection Instruments (I) • Mini Mental State Examination (MMSE) • Montreal Cognitive Assessment Scale (MoCA) • Dementia Screening Scale (DSS) • Quality of Life Interview Schedule • Semi-Structured Questionnaire with DoNs (demographic data & subjective assessment of CI and QoL)

12. Data Collection Instruments (II) Mini Mental State Examination (MMSE) • The MMSE is a widely used screening test for cognitive impairment in older adults. Gold Standard test for measuring CI • Scores 0 -30 • Different cut off points depending on purpose • For this study: • 30-27 Intact • 26-20 Mild • 19-11 Moderate • 10-0 Severe

13. Data Collection Instruments (III) MMSE

14. Data Collection Instruments (IV) MoCa The MoCA was designed as a screening instrument for the detection of mild cognitive impairment. It was developed in response to the poor sensitivity of the MMSE in distinguishing clients with mild cognitive impairment from normal elderly clients (Nasreddine et al., 2005). The MoCA is intended for patients who score within the normal range on the MMSE. MoCA scores 0 - 30. A total score of 26 and above is considered normal. A total score below 26 is indicative of mild cognitive impairment.

15. Data Collection Instruments (V) MoCA .

16. Data Collection Instruments (VI) DSS The DSS was constructed as a dementia screening scale for use by professionals (proxy). Total score varies between 0 to 14. The higher the score the more severe the CI. 1 to 3 minutes to be completed

17. Data Collection Instruments (VII) DSS .

18. Data Collection Instruments (VIII) DONs subjective perceptions of each resident cognitive Status (Likert Scale) • How would you rate his/her cognitive status? Intact Mild Moderate Severe

19. Results (I) • Table 1: Socio-demographic profile of residents (N=100) • Gender N % • Female 82 82% • Male 18 18% • Marital Status • Single 44 44% • Widowed 42 42% • Married 12 12% • Separated 2 2% • Highest level of education • Secondary 46 46% • Tertiary 20 20% • Primary 5 5% • Don’t know 29 29% • Previous Work Status • Formally employed 56 56% • Homemakers 30 30% • Don’t know 14 14%

20. Results (II) Table 2: Age, length of stay and Mean MMSE scores (N=100) Whilst no statistical relationship was found between age or length of stay in the nursing homes and level of cognitive impairment, residents with more severe cognitiveimpairment were more likely to be older and have spent longer periods in long term care.

21. Figure 1: DoN’s perceptions of reasons for Nursing Home admission (N=100)

22. Figure 2: Has the resident ever been clinically diagnosed with Dementia (N=100)

23. Figure 3: Has resident ever had a MMSE done before (N= 100)

24. Figure 4: Rates of Cognitive Impairment amongst nursing home residents using the MMSE and Folstein’s recommended cut offs (N=100)

25. Figure 5: Rates of Cognitive Impairment in nursing home residents using both MMSE & MOCA (N=100)

26. Figure 6: Rates of Cognitive Impairment in nursing home residents according to DoNs (N=100)

27. Table 3: Differences between Matron’s perceptions of residents cognitive impairment & MMSE findings (N=100)

28. Figure 7: Differences between Matrons’ perceptions of residents’ cognitive impairment, MMSE findings and clinical diagnosis

29. Discussion • Almost all residents in the nursing homes surveyed had a cognitive impairment (MMSE 89%, MoCA 97%) • But only 32% had a clinical diagnosis of dementia and 14% were admitted due to dementia • Only one of the four surveyed NH used the MMSE on a regular basis to assess residents’ CI • Directors of Nursing perceptions of residents CI were sometimes quite inaccurate. They tended to under-estimate the severity of cognitive impairment of residents in their care. • Residents with a clinical diagnosis of dementia were more likely to be accurately identified & those without a clinical diagnosis were more likely to be mis-classified. It would appear that having a diagnosis helped DoNs better identify residents’ status

30. Conclusion • These results need careful consideration but raise concerns about the quality of care in Dublin area nursing homes • The misclassification as normal, of people with a mild to moderate cognitive impairment has serious implications including delayed or inappropriate treatments and compromised quality of care • The under-recognition of residents with severe cognitive impairment also has profound implications in relation to residents’ well-being, the delivery of care and other resource allocation • Once admitted to long term care, there is a need for regular and on-going monitoring of residents’ physical and cognitive health care needs and when appropriate pursuing a differential diagnosis

31. Challenges of research • Access • Consent • Relying on others for sampling • Feedback. How to deal with findings which may be unattractive to key stakeholders.

32. Some of the positive outcomes • Testing tools and procedures • Forging good relationships with NHs • NHs have an up-to-date assessment of each participant and a report with results and comparative results • Awareness among their staff • Information and access to workshops and seminars

33. Acknowledgements • This research has been funded by a grant from The Atlantic Philanthropies

34. Cahill S, Diaz-Ponce A, Coen RF & Walsh C. The under-detection of cognitive impairment in Nursing Homes in • the Dublin Area. The need for on-going cognitive assessment. • Age and Ageing. 38(1) Forthcoming 2010 • Our thanks to all those residents in nursing • homes who kindly agreed to participate • in this research study • Thank you for listening