Connections for Life with Dementia

Dementia is a global challenge that requires interdisciplinary thinking, collaboration and innovation to improve the lives of people living with dementia. With no effective medical treatments 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.

‘Connections for Life with Dementia’ 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. 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.

The research team

The project brings together a strong group of interdisciplinary researchers from the Faculty of the Arts, Social Sciences and Humanities; Faculty of Science, Medicine and Health; Faculty of Business and Law; Faculty of Engineering and Information Sciences. The project has active partnerships with the Illawarra Shoalhaven Local Health District, Kiama Municipal Council/Blue Haven Care, Playgroup NSW and the IRT Foundation. Finally, the project also draws on the expertise of people with dementia and their care partners.

Project leadership and steering

A/Prof Lyn Phillipson (Principal Research Fellow - lphillip@uow.edu.au) is the leader of ‘Connections for Life with Dementia’. She is supported by a steering group who bring together expertise from the key areas of: Care (Prof Victoria Traynor - victoria_traynor@uow.edu.au), Play (Prof Lisa Kervin - lkervin@uow.edu.au) and Design (Prof Richard Fleming - rfleming@uow.edu.au). The Leadership group also includes experts in human geography (Dr Chris Brennan-Horley - chrisbh@uow.edu.au), inclusive research methodologies (Dr Louisa Smith) and people who are experts through their lived experience (Dennis Frost and Lynda Henderson from the Southern Dementia Advisory Group).

 

Care Connections

People with dementia in residential aged care benefit from tangible supports to connect to care staff, family, friends, other residents and meaningful activities.

[Music]:

[Speaker 1]: So when we think about residential aged-care we usually think about people requiring clinical care but actually people in residential aged care, particularly those with Dementia need supports to connect to others, to connect to activities that are meaningful to them and to connect to one another.

With people with Dementia at Blue Haven Care, Anne, Gail and Marina from Mindful Generations, we have created personalised scarves and blankets which support meaningful occupations and social connections with one another.

[Speaker: Marina DeFertis]: We decided to design a scarf that had something that they could actually keep with them because we thought once they actually leave their home, they leaving all their possessions and everything else behind.

[Speaker 3]: And you see the joy on their face when you put it on and they’ll look and see something in and play and identify with it. You know, it gives them an occupation than if they're just sitting even if the TV is on or music is on they're really interested in what's on them.

[Music]:

[Speaker: Dr Louisa  Smith]: When we first started doing this work we were really struck by just how little people who lived in residential aged-care had to do and how few things they had to connect with. I've seen Gale and Marina present their work at a local Dementia forum and thought this is perfect. This really required a different approach all together. So it wasn't until we actually offered people objects and tactile things to engage with that they really showed us who they were. So we can hear Mavis tell us when we then….. she sees some tweed that she actually used to weave fabric and we hear whole stories from her that we never would have known if we didn't have that tweed fabric there.

[Speaker: Mavis]: …you get into another position. And that's when we used to do weaving like this. One step. Two steps. And you’re there.

[Laughing]:

[Speaker: Marina DeFertis]: We knew that there was a great part off the scarfie but I think that what the waves are and actually hadn't thought to is… is actually seeing it from different angles as well. Especially with the interaction with the families.

[Speaker 6]: That's a comfort and that's a comfort for us. Isn’t it?

[Speaker 7]: Yeah.

[Speaker 6]: Yeah.

[Speaker 1]: Multi-sensory supports like Staffies allow people with Dementia to connect to the community, to activities and to one another.

[Music]:

 

Care Connections

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. In December 2019, Kiama Council and Blue Haven Care moved residents to a new purpose-built residential aged care facility, Blue Haven Bonaira. Prior to the transition, insights from observations, journey mapping and world café brainstorming workshops conducted with residents, staff and care partners highlighted a number of challenges and opportunities.

 

 

Residents with dementia at Blue Haven Bonaira in Kiama are being supported to make connections through the use of personalised activity scarfs and blankets.

Understanding post-diagnostic health service connections

Led by Dr Luise Lago, the ‘health services connections’ study will explore the priorities of key stakeholders regarding public outpatient and community health services research to promote quality of life for people living with dementia within the Illawarra Shoalhaven Local Health District (ISLHD). The study will identify local priorities and the quality and nature of available outpatient datasets. Of primary interest is understanding the priorities for access to outpatient services and the extent to which these reflect best practice clinical guidelines for post-diagnostic care. These consultations will lay the foundations for a research protocol to investigate regional variation, and factors effecting access to and use of healthcare. Outputs will include a linked dataset using ISLHD data, a list of non-admitted services in the region, including those relevant to people living with dementia, descriptive analysis of access to admitted and non-admitted services by people living with dementia and a matched cohort, and an application for future funding, informed by key stakeholder consultation,  which will link data available through the Illawarra Health Information Platform (IHIP) and other data sources to meet ISLHD priorities. This study is being led by Dr Luise Lago (AHSRI). The team includes ISLHD (Jan Potter and Paul Van den Dolder), A/Prof Lyn Phillipson (ASSH) and Kara Cappetta (HDR student).

 

Care Connections team

Dr Louisa Smith, Paul van den Dolder (ISLHD), Dr Luise Lago (AHSRI), Dr Montse Ros (EIS), Dr Lyn Phillipson (ASSH), Nick Guggisberg (Kiama Municipal Council), Kara Cappetta (ASSH), Clare Rogers (Blue Haven Care), Dale Wakefield (Blue Haven Care), Dr Kishan Karriipanon (ASSH), Dennis Frost (Southern DAG), Lynda Henderson (Southern DAG). 

Dr Louisa Smith

  

 

  

Play Connections

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) for all involved.

During 2019, in collaboration with Playgroup NSW and IRT Foundation, the Play Connections team have 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

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 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). Starting March 2020.
  • The IRT Intergenerational Play Group hosted at IRT Wellness Centre (Woonona), will be run the third Wednesday morning of each month (10.30am-12pm). Starting April 2020.

Play Connections team

Prof Lisa Kervin (Project lead, ASSH), Dr Lyn Phillipson (ASSH), A/Prof Sarah Howard (ASSH), Dr Cathrine Neilsen-Hewett (ASSH), Dr Irina Verenikina (ASSH), Dr Pippa Burns (SMAH), Dr Jack Yang (EIS), Dr Jessica Mantei (ASSH), Karen Van Woudenberg (Playgroup NSW), Toby Dawson (IRT Foundation), Dr Jun Ma (EIS), Prof Christian Ritz (EIS), Gregor Cullen (ASSH). Expert facilitators: Anne O'Sullivan, Tracey Fredericks and Ali Blacklaw

Design Connections

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 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) 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.

Design Connections team

Dr Chris Brennan-Horley (Project lead, ASSH), Prof Richard Fleming (Dementia Training Australia, SMAH), Dr Lyn Phillipson (ASSH), Sen/Prof Paul Cooper (EIS, SBRC), Prof Tim McCarthy (EIS, SBRC), Clayton  McDowell (EIS, SBRC), Dr Cole Hendrigan (SMART), Dr Kishan Kariippanon (ASSH), Dr Wanqing Li (EIS), Prof Chris Cook (EIS), Steven Beltrame (EIS, SBRC), Dennis Frost (Southern DAG) and Catherine Andrew (Southern Cross University).

Knowledge exchange centre

Connections for Life with Dementia is 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.

For further information on the KEC please contact Karen Larsen-Truong.

Project partners


 

  

 

In the media

UN Sustainable Development Goals

This project is working towards the UN Sustainable Development Goals:

Goal 3: Good Health and Wellbeing   Goal 9: Industry, Innovation and Infrastructure   Goal 10: Reduced inequalities   Goal 11: Sustainable Cities and Communities.   Goal 17: Partnerships for the Goals