Do residents with dementia have the right to live their life amid cognitively intact people?

1. Do residents with dementia have the right to live their life amid cognitively intact people? Experiences at Mercy Aged Care Services - Brisbane

2. Considering our options ... • In 10 years preceding - only 2 residents t/ferred because behaviour could not be managed • In the future - no DSU would ever be big enough! • Reluctance to put a group of people with difficult behaviour in one area • Reluctance to put a group of people with communication problems in one area

3. Preference for residents to age in place - ie not moving into and out of dementia specific unit • Continuity of care - same staff caring for high and low care, dementia and non dementia

4. What does the research say? Much discussion but little empirical research Study by Luszcz & Dean (Flinders Uni 1999) Aim: to assess the impact of confused behaviour on QOL of non-confused residents Results: Most residents professed preference forsegregated living arrangement However preference was not strong

5. Research cont’d Non confused residents’ satisfaction linked to certain living arrangements eg happy to share living or dining room but not bathroom facilities Physical living arrangements less important than psychological factors r/t coping • distancing • focusing on positives

6. Based on this research We decided to: • create a supportive living environment • enhance resident coping skills and hopefully decrease the impact of confused behaviour on the QOL of other residents

7. Creating a place for purposeful activity - ‘Bethany’ 1999 an area in the centre of the Nudgee site refurbished - using specifications, design and fit-out appropriate for residents with dementia Gave us the opportunity to trial our alternative before rebuilding of the main residential area (2002)

8. Development of a dementia specific program Based on CERA ‘Beyond Crowd Control’ Framework consists of inter-linked components: • social environment • physical setting • worker attributes, training, & support • client needs • activity • carer needs • Aligned well with our philosophy

9. Staff selection • Contemporary knowledge and experience • Aligned with the philosophy of organisation and our direction for dementia care • Training skills

10. Model development Model based on: • integration • flexible dementia specific programs run from Bethany • education for all care staff (later extended to include admin and hotel services staff) • education for cognitively intact residents & their family • education and support for relatives of residents with dementia

11. Implementation - Bethany • Operates 7 days / week • 1 specialist staff member and volunteer • Attendance decided each day based on discussion with RN and care staff • Group consists of approximately 6 residents • Sessions times 9.30am to 1pm • Activity decided ‘on the day’ and may change - depends on the group

12. Barriers at the beginning • Some care staff expectation of ‘the more the merrier’ • Wanting a prescriptive program eg Monday- cooking; Tuesday - craft; • Wanting to decide well in advance who is going • Understanding that if resident want to leave the group - they can!

13. Changing attitudes Formal Evaluation undertaken over a 2 weeks period. Included: • Bethany staff evaluating each session • Care staff evaluating resident behaviour in the afternoon after attending Bethany (using Descriptions of Emotional States)

14. The Power of Education Staff education program • runs 2 to 3 times a year • 1& half hours once a week for 6 weeks • Staff paid to attend • 2004 - compulsory attendance

15. Course Content • What dementia is • types & progression of dementia • communication • memory • behaviour - dangers of labelling • HDS tool and its use in planning care • Dementia Simulation Workshop

16. Benefits of Staff Education • Understand the model • Get to know Specialist Staff - comfortable discussing day to day care issues • Empowering staff to act as resident advocates • Evaluation of the course by attendees- very positive

17. Dementia Education for residents who do not have dementia Nudgee facility comprises 3 cottages and 4 clusters (112 residents) Education sessions held in each area Topics covered: • What is dementia • Why we don’t have a DSU • Ways to keep the brain active • Communication & coping skills

18. Feedback from residents Great relief in knowing dementia is not contagious A significant ‘turn around’ - how they can help! Better understanding of how to communicate Better understanding of confused behaviour and how to redirect / distract

19. Family Support Group • Held 3 times per year • Open discussion of their concerns - knowing they are not alone • Benefit of helping each other • Learn to see the light hearted side

20. Education for family of non confused residents Relatives also need to know how to cope with residents with dementia. Ed. conducted separately in each area. Topics covered: • What is dementia • Why we have integration • Different behaviours of residents

21. Feedback from Families A short survey sent to all family / friends who attended the education sessions Results: Family of residents who have dementia • were very happy with the education • wrote many positive statements Family of residents who do not have dementia : • found the info interesting, • understood the benefits of integration • and also wanted to continue the sessions

22. Education outcomes Staff • confidence to be less task oriented • acknowledgement - all staff have a role Residents • change from fear / ignorance to a willingness to help

23. Education outcomes cont’d Family Support • understanding ‘why’ & realising the future • self help and support thru’ grieving process Relatives • greater understanding of residents with dementia • understanding that we want the visiting experience to be comfortable & positive for all

24. Hierarchic Dementia Scale • Designed to rate severity of dementia • focus on what the resident can do • Acknowledges: fatigue; non-co-operation; sensory, physical and emotional disability • Results show residents capabilities - translates to care plan to enhance abilities & maximise independence • Takes 20 mins - does not have to be done in one sitting

25. Conclusion • Research is inconclusive - both integration and segregation have benefits and deficits • Our model encompasses much more than where the resident sleeps • It has evolved over time and will continue to change • It suits our situation - it may suit yours