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

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

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

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 for segregated living arrangement However preference was not strong

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

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

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)

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

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

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

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

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!

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)

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 compulsory attendance

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

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

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

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

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

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

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

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

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

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

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