Inspirational Person Centred Dementia Care BUT WHERE ARE

Inspirational Person Centred Dementia Care BUT WHERE ARE THE FLOWERS? Familiarity and social inclusion reducing BPSD Starrett Lodge Aged Care Facility Helga Merl and Colin Mc. Donnell Better Practice Awards Presentation September 2012

Acknowledgements Project Team Colin Mc. Donnell, Care Service Manager Starrett Lodge, NSW Central Coast Uniting. Care Ageing Helga Merl, Dementia Clinical Nurse Consultant Hunter New England Local Health Network Dr Lyndon Bauer, Film production and editing ddddd

The Generation Gap ddddd

Current Reality Residents with Dementia in RACFs are: • Inactive and apathetic 87% of time [1] • Spent most of the day sitting or lying down and • Unlikely to engage in social interaction [2] Staff erroneously believe that: • Inactivity and social detachment is part of Dementia and • Inactivity is not modifiable [3] Inactivity leads to : • Boredom • Lowered quality of life and • Increased BPSD such as agitation and aggression[4]

Enabling Environment “It has become imperative to change the ‘master narrative’ of living with dementia that has consisted of ‘loss’, ‘failure’ and ‘meaningless existence’ and substitute it with more positive discourse and visual images. ” [5] Is this possible in RACFs?

Functional Abilities Framework “ Familiarity is the relationship between an individual and something that individual has had considerable experience with. ” Kaplan & Kaplan (1982)

Garden Project Goal: Create a novel care environment / intervention in the form of a therapeutic garden with Atrium for residents with dementia, carers, families and staff in order to increase the quality of life for all. Target Group: 15 residents in the Dementia Specific Unit, all with BPSD. Staff, Carers and families of the residents. Objectives: • Reduce BPSD and improve Qo. L of the residents with dementia. • Reduce staff stress and improve the staff care giving experience; • Reduce carer and family (loved ones) stress and improve the visiting experience [6]

Background • Partnership & Funding – Bequest (UCA) 2009 • Design Objectives • The proposed design featured a range of appropriate stimuli, based on the concepts of the ‘phenomenology of space use’ and the ‘embodied experience of landscape. • The major theories considered in the garden design included: • Prospect-refuge theory; • Habitat theory; • Attention Restoration theory; • Territorial Imperatives/conflict; • Privacy and Community; • Desire lines.

Backyard Blitz begins …

Enabling Design • A key feature of the garden is the way it provides opportunities to meet the needs of individual users, while allowing for change. • The design allows for the use of varied lighting by day and night. It also features personalised memory boxes for displaying items designed and produced on site, or brought in from home. Height differences in the garden’s terrain facilitate prospect and refuge while providing a sense of destination. • Tree plantings improve the sense of outdoor space. A transition space in the form of atrium between the outdoor and inside spaces. It also reduces the difference in temperature between the inside and outside areas, encouraging residents to use the garden.

Before and after …

Feel the Serenity

Gone Fishing

“I never learnt to drive” “But here I find myself at the beach”

Take a Number

A walk down Memory Lane

Feels like Home

Evaluation Methodology Quantitative • Pre and post garden measures Dementia Quality of Life Instrument (Dem. Qo. L), Cornell Dep. Scale, PAS, MMSE, Cohan Mansfield Agitation Index Log of garden use - 12 days 3 months pre (Autumn) and 3 months post construction (Spring) Qualitative • Observations • Videotaped interviews 1 resident 1 lifestyle coordinator 3 Oral Hygienist students 2 carers 1 GP 2 personal care staff member 1 regional executive of care

Results There were statistically significant improvements in all empirical measure • Mean depression scores decreased by 13. 3% (t=2. 4, df=9, p=. 02) • Mean agitation scores decreased by 46. 7% (t=7. 48, df=9, p<. 0001). • Garden use increased 22%. • Observational evidence - almost 100% voluntary migration from TV room to the new atrium/sunroom.

Results Mean Qo. L increased by 12. 8% (t=4. 57, df=9, p<. 0001).

Results Increased visiting / interaction brought babies to the bottom of the garden

Results - Interviews • Open ended questions designed to elicit impressions and whether project aims achieved. – reduce the stress of staff members and improve their care-giving experience – improved the Qo. L of carers loved one as well as their own stress levels and improved their visiting experience

Memory Explicit memory • Remember Implicit memory • Know • Non conscious • Non verbal • Step by step procedures • Feelings and emotions

Priming and Recognition • New interventions should focus on aspects of familiar environments – smells, music, food, objects, pictures, families communities, church, care staff • Familiarity accesses explicit & implicit memory – retrieved most frequently and efficiently via the implicit memory system in elders with dementia.

Familiarity Algorithm Enabling Environment equals Quality of Life

Countering Malignant Social Psychology Antidote: Concentrating on ability not disability Relative sparing of Occipital, temporal, parietal & motor strip in ATD (seeing, hearing, touch & movement) Baby has never had fruit before & resident acts in Socially Safe & Sensitive ways of behaviour

Countering Malignant Social Psychology Antidote: Concentrating on ability not disability Context sensitive behaviour: Caring – right thing, right time Socially safe & sensitive ways of behaviour: Involves memory, thinking, motivation, emotion & knowledge of social norms.

Reverse Stereotypes – School Days • Residents as teachers not care recipients • Role reversal – reducing behaviours in exceptionally excitable children

Social Inclusion – KIM Project

Social Inclusion – Author at Any Age

“HE WHO HAS A WHY TO LIVE FOR CAN BEAR ALMOST ANY HOW” Nietzsche

Questions ?

Contact Details • Colin Mc. Donnell, Care Service Manager, Starrett Lodge Uniting. Care Ageing Hunter, Central Coast & New England Region Email: colin. mcdonnell@uchunter. org. au • Helga Merl, Clinical Nurse Consultant Hunter New England Local Health Network Email: Helga. Merl@hnehealth. nsw. gov. au

Acknowledgements We would like to thank the following people for their generous financial and administrative support of this project. Steve Teulan, Director, Uniting. Care Ageing NSW. ACT Bryan Mc. Loughlin, Regional Director, Uniting. Care Ageing Hunter, Central Coast & New England Region