Lyn Phillipson reports on an innovative research project she is leading at the University of Wollongong in NSW to support and enhance the social health of people with dementia
Connections for Life with Dementia is funded by the University of Wollongong (UOW) Global Challenges program. It brings together people with dementia and their care partners with experts from social science, human geography, education, public health, engineering and information science.
‘Connections’ is building understanding and taking action to support and enhance the social health of people with dementia through reducing barriers and providing support for social, civic and care connections.
The project has active partnerships with the Illawarra Shoalhaven Local Health District, Kiama Municipal Council, Blue Haven Care, Playgroup NSW and the IRT Foundation. Importantly, the project also draws on the expertise of people with dementia and their care partners.
Dementia is a global challenge that requires interdisciplinary thinking, collaboration and innovation to improve the lives of people living with dementia. With no effective treatment or cure in sight there is increasing urgency to support the social health and wellbeing of people living with dementia and those at risk of developing it.
Residents with dementia at Blue Haven Bonaira in Kiama are being supported to make connections through the use of personalised activity scarfs and blankets. Photos courtesy Connections for Life with Dementia
The notion of social health (Huber 2011) and its application within dementia research and practice (Droes et al 2017) provides an exciting platform for applied interdisciplinary research and action (Vernooij-Dassen et al 2018). In particular, a social health approach to research and action focuses on supporting the capacity of people with dementia to: fulfil social demands; manage their life; and participate in meaningful activities that support social connections (Droes et al 2017).
Connected, active and social community environments are essential to reduce the need for institutional care and the economic costs associated with unnecessary hospitalisation (Kalache 2013; Eckermann 2017). They can also limit the decline of older people at risk of cognitive impairment and increasing co-morbidity (Huber 2011; Jeon et al 2018).
Connections for Life with Dementia specifically explores how neighbourhood and home design (Design Connections); intergenerational play (Play Connections); and creative, personalised supports in aged care (Care Connections) can support people with dementia to live connected lives that are manageable, meaningful and comprehensible.
Dr Louisa Smith (UOW) (second from left), facilitating a session at the UOW Maker Space to inspire the ‘care imagination’ of the participants and support their making of personal objects for residents living with dementia at Blue Haven Bonaira
Living in residential aged care environments has been associated with poor social relationships and loneliness for residents (Casey et al 2016). Having moved from their own homes, many residents miss opportunities to maintain social connections, reminiscence and engage in meaningful activities (Smith et al 2018). During times of transition the ability to maintain social connections and remain engaged in meaningful activities become even more important. The Care Connections study, led by Dr Louisa Smith, uses a Participatory Action Research method to:
• Understand how people with dementia within a residential care setting maintain connections with their interests, one another, staff and their visitors.
• Implement and evaluate activities to support people with dementia to develop and maintain connections during transition to a new residential facility.
This study, being conducted in partnership with Kiama Council and Blue Haven Care is part of a long-term collaboration to improve the lives of people with dementia in Kiama, NSW through projects such as Dementia Friendly Kiama (http://bit.ly/DF-Kiama). In December 2019, Kiama Council and Blue Haven Care moved residents to a new purpose-built residential aged care facility, Blue Haven Bonaira. The Care Connections study has been established in part to support the transition to this new site and ensure that people with dementia have opportunities to connect with what is important to them.
Using a Participatory Action Research approach, the Care Connections team is working with staff, care partners, residents and other stakeholders to understand, explore and put into action creative ways to support residents with dementia during the move and settling-in period.
Through journey mapping and world café focus groups, over 70 staff and care partners were consulted around the challenges and opportunities for people with dementia as they moved to the new facility. Care partners, staff and management at Blue Haven, along with an interdisciplinary team of academics from UOW, were consulted through creative brainstorming sessions around what would best maximise these opportunities and address the challenges.
The Care Connections team observed residents with dementia in their everyday lives before the transition to the new facility. Insights from this research highlighted that the opportunities for residents to ‘connect’ with their interests, with one another, with staff and their visitors was limited by their access to personal objects and belongings.
In response, Care Connections has partnered with a local social enterprise, Mindful Generations (www.mindfulgenerations.com.au), to co-design personalised Scarf-es with people with dementia, care partners, staff and volunteers. The Scarf-e is a large scarf with clip-on activity items (tactile, cognitive, visual and reminiscence) as well as pockets for glasses or other personal items. It enables the wearer to access those items and engage with the activities whenever they choose to, without having to wait or rely on someone to provide them (AJDC 2019). The project will also support co-design of Life Boxes and Life Story Books to encourage the residents’ sense of identity and establish a stronger basis for their social connections.
A partnership with the UOW Maker Space (http://bit.ly/UOW-makerspace) is also allowing people with dementia, staff and families to make personal objects for their Scarf-es and Life Boxes. During 2019/2020 Louisa and the team are studying the impact of these resources on supporting connections before, during and after the transition to the new facility.
Intergenerational interactions can promote multiple benefits for young and old alike, as well as for society as a whole (Whitehouse & George 2018). Intergenerational playgroups (IGPs) are one way for supporting interactions between young and old, including people with dementia (Phillipson & Johnson 2018). Well-designed programs can offer the possibility for valuable experiences that can enhance quality of life (Cartmel et al 2018) and may also have other physical and cognitive benefits for people with dementia (Baker et al 2017).
The Play Connections project, led by Professor Lisa Kervin (with her team from Early Start) brings together a unique interdisciplinary team to build the evidence base for supported play programs for people with or at risk of dementia, children (birth to five years) and their parents/carers in both early learning and aged care settings. The study is exploring and theorising the interactions that take place in these settings and how different aspects of the environment and supported facilitation can improve the Ways to Wellbeing (Connecting, Learning, Giving, Taking Notice, and Being Active) (Aked et al 2008) for all involved.
During 2019, in collaboration with Playgroup NSW and IRT Foundation, the Play Connections team has used observational and survey research within existing playgroups in residential aged care settings to inform design principles for supported Intergenerational Playgroups. These initial principles have been further tested through Intergenerational Play Dates hosted at UOW’s Early Start’s Playful Learning Space.
Connecting the generations using art therapies at an Early Start Intergenerational Play Date during 2019
This is the first time a dedicated program targeting older people has been hosted in the UOW facility. Before the start of these Play Dates an environmental audit was undertaken against dementia design principles for public buildings (Fleming et al 2017) with subsequent modifications to signage, human resources and furniture to enable the participation of people with dementia and young families.
Play sessions have focused on exploring how different activities facilitated by experts (eg music and movement and art therapy) promote the Ways to Wellbeing (Aked et al 2008) for all participants across the generations. A key contribution to this has been the development of an intergenerational pedagogical framework to inform the field. The research team has implemented a Virtual Ethnographic Toolkit to enable video capture and subsequent analysis of the group activities. Two new IGPs will be established in 2020 to further build upon the intergenerational pedagogical framework as factors that support intergenerational connections, as well greater understanding of the logistics of bringing together the generations to promote ways to wellbeing for all involved.
UOW, Playgroups NSW and IRT Foundation will be supporting the two new IGPs in Wollongong in 2020 during school terms:
• The Early Start Intergenerational Play Group hosted in the Early Learning Space (UOW), will be run the first Wednesday morning of each month (9.30am-11am).
• The IRT Intergenerational Play Group hosted at IRT Wellness Centre (Woonona), will be run the third Wednesday morning of each month (10.30am-12pm).
Contrary to popular belief, the majority of people with dementia live in community settings. Whilst limited, there is growing evidence that the design of buildings (Fleming et al 2016; Fleming et al 2017; Tartarini et al 2017), streets (Mitchell & Burton 2006) and neighbourhoods more broadly (Ward et al 2018) can either support people with dementia to maintain their connections – and other Ways to Wellbeing – or hinder them. As our communities become more urbanised, it is critical to establish more evidence regarding how urban environments can support ageing in place, wellbeing and connectedness for those with dementia, as well as those at risk of developing it.
The Design Connections study, led by Dr Chris Brennan-Horley (human geographer) brings together a team of urban designers, design psychologists, engineers, public health practitioners and people with dementia. It is exploring how neighbourhood and home design supports or hinders the quality of life of people with dementia living in the community. Of interest is how building level and neighbourhood design supports social connections, engagement in meaningful activities, feelings of safety, choice and control and feelings of inclusion and respect.
Phase 1 of the study involves interviews with people with dementia and their care partners who are living in apartments in the Wollongong CBD. To support these interviews, the research team has developed a new tool to audit current apartments against established dementia-friendly design principles (Fleming & Purandare 2010).
Dr Chris Brennan-Horley (UOW) (centre, wearing cap) providing a practical session for researchers and other key stakeholders on dementia-friendly design principles at the UOW Innovation Campus
In Phase 2, the focus will shift to neighbourhood-level auditing, participatory mapping and walking interviews. The findings from both studies will be brought together through case analysis (Emmel & Clarke 2009) to gain new insights into the relationship between neighbourhood/home design and quality of life for people with dementia. The research also has the potential to support small-scale strategies for improving our participants’ neighbourhoods.
The findings will be used to develop a set of principles which will be useful in understanding the key design features important for supporting people with dementia to remain connected as they age in place.
Associate Professor Lyn Phillipson is Principal Research Fellow in the Faculty of Social Sciences, School of Health and Society at the University of Wollongong (UOW); Leader of the Connections for Life with Dementia Global Challenges Keystone Program (UOW); NHMRC-ARC Dementia Fellow, Australian Health Services Research Institute 2016-2020; and Age-Friendly Environments Mentor, World Health Organisation and International Federation on Ageing 2018-2019
Knowledge exchange, impact
From the outset, Connections for Life with Dementia has been committed to undertaking research that provides real benefit (impact) for people with dementia, care partners and services. In order to achieve this, we have established what we call a Knowledge Exchange Centre (KEC). Led by Karen Larsen-Truong, the KEC supports dissemination of findings as well as the mutual exchange of ideas and expertise to encourage:
• engagement with the research
• capacity building
• dissemination, translation and utilisation of findings
• impact through changes to knowledge, practices and policies.
The key aspects of the KEC include:
• Integrating the lived experience expertise of people with dementia and their care partners into all aspects of the project.
• Knowledge sharing and capacity building within the university research team (workshops, mentoring, sharing expertise).
• Activities to promote knowledge exchange with relevant stakeholders to support co-creation of knowledge, dissemination and utilisation of new knowledge.
During 2020, the KEC will maximise access and awareness of new knowledge generated from the research through the creation of plain language resources. These will include:
• A better practice guide for Supported Intergenerational Playgroups.
• Dementia Enabling Assessment Tool for the home environment (DEAT-Home) and another for use in auditing neighbourhoods and local precincts.
Through a focus on social health, this innovative interdisciplinary research project intends to promote connectedness and quality of life for people living with dementia.
To keep up to date with the progress of this research you can subscribe to the ‘Connections’ newsletter here (www.uow.edu.au/global-challenges/living-well-longer/pieces/). Otherwise, please contact Associate Professor Lyn Phillipson at the University of Wollongong (email@example.com).
Aked J, Marks N, Cordon C, Thompson S (2008) Five Ways To Wellbeing: The Evidence. London: New Economics Foundation.
Australian Journal of Dementia Care (AJDC) (2019) Dementia Activity Scarf-e. AJDC 8(2) 37.
Baker JR et al (2017) Intergenerational Programs May Be Especially Engaging for Aged Care Residents With Cognitive Impairment: Findings From the Avondale Intergenerational Design Challenge. American Journal of Alzheimer’s Disease & Other Dementias® 32(4) 213-221.
Cartmel J et al (2018) Developing An Evidenced Based Intergenerational Pedagogy in Australia. Journal of Intergenerational Relationships 16(1-2) 64-85.
Casey ANS, Low LF, Jeon YH, Brodaty H (2016) Residents’ Perceptions of Friendship and Positive Social Networks Within a Nursing Home. Gerontologist 56(5) 855-867.
Droes RM et al (2017) Social Health And Dementia: A European Consensus On The Operationalization Of The Concept And Directions For Research And Practice. Aging and Mental Health 21(1) 4-17.
Eckermann S (2017) Policy Implications and Applications Across Health and Aged Care Reform with Baby Boomer Ageing – From Age and Dementia Friendly Communities to Palliative Care. In: Eckerman S Health Economics from Theory to Practice: Optimally Informing Joint Decisions of Research, Reimbursement and Regulation with Health System Budget Constraints and Community Objectives 279-320. Switzerland: ADIS.
Emmel N, Clark A (2009) The Methods Used In Connected Lives: Investigating Networks, Neighbourhoods And Communities. Working Paper, Economic and Social Research Council: National Centre for Research Methods, Southampton. Available at: http://usir.salford.ac.uk/id/eprint/10445/.
Fleming R, Purandare N (2010) Long-term Care For People With Dementia: Environmental Design Guidelines. International Psychogeriatrics 22(7) 1084-1096.
Fleming R et al (2016) The Relationship Between The Quality Of The Built Environment And The Quality Of Life Of People With Dementia In Residential Care. Dementia 15(4) 663-680.
Fleming R et al (2017) The Development and Testing Of The Dementia Friendly Communities Environment Assessment Tool (DFC-EAT). International Psychogeriatrics 29(2) 303-311.
Huber M et al (2011) How Should We Define Health? BMJ 343 d4163.
Jeon YH et al (2018) Improving The Social Health Of Community-Dwelling Older People Living With Dementia Through A Reablement Program. International Psychogeriatrics 30(6) 915-920.
Kalache A (2013) The Longevity Revolution: Creating A Society For All Ages. Adelaide Thinker In Residence 2012-13. Adelaide, SA: Department of the Premier and Cabinet.
Mitchell L, Burton E (2006) Neighbourhoods For Life: Designing Dementia‐Friendly Outdoor Environments. Quality in Ageing and Older Adults 7(1) 26-33.
Phillipson L, Johnson K (2018) Project Summary. Evaluating The Impact Of Intergenerational Playgroups In Residential Aged Care. Available at: http://bit.ly/39BChiv.
Phillipson L, Hall D, Cridland E, Fleming R, Brennan-Horley C, Guggisberg N, Hasan H (2018) Involvement Of People With Dementia In Raising Awareness And Changing Attitudes In A Dementia Friendly Community Pilot Project. Dementia 8(7-8) 2679-2694.
Smith N, Towers A-M, Palmer S, Beecham J, Welch E (2018) Being Occupied: Supporting ‘Meaningful Activity’ In Care Homes For Older People In England. Ageing and Society 38(11) 2218-2240.
Tartarini F, Cooper P, Fleming R, Batterham M (2017) Indoor Air Temperature and Agitation of Nursing Home Residents With Dementia. American Journal of Alzheimer’s Disease & Other Dementias® 32(5) 272-281.
Vernooij-Dassen M, Moniz-Cook E, Jeon Y-H (2018) Social Health In Dementia Care: Harnessing An Applied Research Agenda. International Psychogeriatrics 30(6) 775-778.
Ward R et al (2018) The Lived Neighborhood: Understanding How People With Dementia Engage With Their Local Environment. International Psychogeriatrics 30(6) 867-880.
Whitehouse P, George D (2018) From Intergenerational to Intergenerative: Towards the Futures of Intergenerational Learning and Health. Journal of Intergenerational Relationships 16(1-2) 196-204.