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 researchStudy by Luszcz & Dean (Flinders Uni 1999)Aim: to assess the impact of confused behaviour on QOL of non-confused residentsResults: Most residents professed preference for

segregated living arrangement However preference was not strong

Research cont’dNon 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 attitudesFormal 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 EducationStaff 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

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 dementiaNudgee facility comprises 3 cottages and 4

clusters (112 residents)Education sessions held in each areaTopics covered: What is dementia Why we don’t have a DSU Ways to keep the brain active Communication & coping skills

Feedback from residentsGreat 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 residentsRelatives 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 FamiliesA 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’dFamily 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