The Dementia Podcast

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Join Colm, Professor Assumpta Ryan and Professor Faith Gibson in their discussion of the meaning and best practice implementation of reminiscence and life story work in dementia care.

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Join Colm, Professor Steve Macfarlane, Maree Mastwyk, Trish and John as they discuss the personal and professional characteristics of a clinical trial.  

Professor Steve Macfarlane is the Head of Clinical Services at HammondCare's Dementia Centre  and his colleague, Maree Mastwyk  is a Team leader of Clinical trials. Together they define clinical trials in a professional context and provide their expertise on how to operate a clinical trial.  

John, a person living with dementia and his partner Trish are both currently on a clinical trial. They describe their personal experiences of this trial.  

The Australian Clinical Trials Alliance’s ‘Report on the Activities & Achievements of Clinical Trials Networks in Australia’ and an article by the Western Alliance are informative resources on the operations of clinical trials in Australia.  

Policy & Medicine’s article 'The Importance of Clinical Trials' explains the impact of clinical trials in America.  

ANZCTR is an online registry for of clinical trials being undertaken predominately in Australia and New Zealand, and to a smaller extent other parts of the globe. This link connects you to a similar network in the America and here is a dementia research registry located in the United Kingdom.   

*We would like to acknowledge as clinical best practise is continuously evolving that the comments made in this episode is reflective of the period leading up to the 7th of October.  

Below we have listed the definitions of some terms mentioned in this episode:  

Efficacious: Something is able to produce its intended result.  

Placebo: A substance given to someone who is told that it is a particular medicine, either to make that person feel as if they are getting better or to compare the effect of the particular medicine when given to others.  

Sponsor: Any individual or group that provides financial or material support to a study or endeavour in return for commercial advertisement.  

Comparator: The comparator study is used to compare the effectiveness of the investigational product to the existing drug. 

Tolerability: Represents the degree to which overt adverse effects can be tolerated by the subject/patient. 

Con-meds: Concomitant medications (con-meds) are any prescription or over-the-counter drugs and supplements taken in addition to an investigational therapy by a study subject. 

Proof of concept: Proof of concept (POC) is an exercise in which work is focused on determining whether an idea can be turned into a reality. A proof of concept is meant to determine the feasibility of the idea or to verify that the idea will function as envisioned. It is sometimes also known as proof of principle. 

Adverse events: An unexpected medical problem that happens during treatment with a drug or other therapy. Adverse events may be mild, moderate, or severe, and may be caused by something other than the drug or therapy being given. Also called adverse effect.

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Join Colm in a unique ‘live’ episode to celebrate World Alzheimer’s Day and  Dementia Action Week.  

This episode allows us to join part of the discussion on the 'Stronger Together'   webinar that launched HammondCare and it’s Dementia Centre ‘s  partnership with Topaz , a leading Dutch aged care provider.  

This conversation centres around the importance of international partnership and knowledge exchange to raise awareness and increase learnings in the field of dementia care and research.  
Colm gets out of the host seat and joins the panel, as we join our host Marie Alford, Head of Dementia Services at the Dementia Centre. Marie is joined by Topaz CEO Lia de Jongh, Professor Wilco Achterberg, Leiden University Professor of Institutional Care and Elderly Care Medicine and Professor Susan Kurrle, University of Sydney Curran Chair of Health in Older People.  

Don’t forget to click on the full webinar link in the show notes to hear,  as the Dutch General Counsel to Australia, Frank van Beuningen and Australian Ambassador to the Netherlands, Matthew Neuhaus help launch this new initiative.  

 The research paper 'Clustered domestic residential aged care in Australia: fewer hospitalisations and better quality of life' is an example of the work that HammondCare’s Dementia Centre will be sharing with Topaz in their knowledge exhange partnership.  

 Here are some examples of the work that Professor Wilco Achterberg has completed and Topaz will share with HammondCare’s Dementia Centre in return.

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Join Colm, A/Prof Steve Macfarlane and Holly Markwell as they introduce the series ‘Talking Dementia’. Steve is the head of Clinical Services at The Dementia Centre and Clinical Specialist at Dementia Support Australia. Holly is head of professional development at ‘The Dementia Centre’.   

The ‘Talking Dementia’ series seeks to provide short and informative episodes on the varying types of dementia. In this episode the panel examines dementia as an umbrella term and discusses, symptoms, treatments and avenues for support.  

Dementia Support Australia is a nationwide support service for those living with dementia who are experiencing behavioural and psychological symptoms.  

For those in need of support that is specific to their country we have linked this international repository of support agencies.  

The novel and online forum 'My home my life' was referenced in this episode and shares practical ideas for people living with dementia.  

The 'World Alzheimer Report 2015', Dementia statistics and epidemiology founded by Dementia Australia and this Dementia Fact sheet written the World Health Organisation provide informative and relevant statistics pertaining to the national and global impact of dementia.

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Join Colm and an incredible lived experience panel as they discuss the role of the dementia activist, advocate, and champion and the personal and professional partnerships involved in ensuring the voices of those living with dementia are heard. 

On this panel, we have the professional partnership representatives of Joanna Fozard and Agnes Houston. Joanna is employed by ‘The Dementia Centre’ as Agnes’ personal assistant and supports Agnes to fulfil her activist role and provides feedback and insight to HammondCare on how to support someone with dementia to continue as an advocate. Agnes has campaigned for the improvement of the lives of people with dementia in Scotland and was awarded an MBE, a Churchill Fellow and has written a book detailing her experience 'Talking Sense': Living with sensory changes and dementia' . 

Joining us also on this panel are John Quinn and Glenys Petrie. John was diagnosed with younger onset dementia and alongside his partner Glenys, have used their experiences and knowledge to campaign for those living with dementia and empower those with a diagnosis to live their best life. 

To read more about the incredible life story of Glenys and John the University of Queensland have compiled their story here.

There are also many amazing advocacy programs across the world such as ; the Edinburgh Centre for Research on the Experience of Dementia Australian Dementia Advocates Program and this directory of resources. 

Together this panel illustrates how activism and dementia care are linked through the incredible efforts of both the individual and their support network.

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Join Colm and best-selling author Alex Winstanley as they discuss Alex’s award-winning book “My Grandma has Dementia” and the importance of lived experience and child targeted authorship in dementia care. Alex spent years as a teacher and carer and has since set up a not-for-profit organisation called Happy Smiles Training CIC . Alex is currently writing a series of children's books that support them to understand a range of long-term health conditions, including dementia, depression and cancer. 

In this episode, Colm and Alex discuss the role of his book in introducing children to the impact of dementia in a soft, supportive, yet, realistic and positive way, through the personal story of his own grandma. Alex shares his reasons for writing the book, hints and tips and the use of wonderful illustrations with subtle messages to help start the conversation.

This conversation is the first of many podcast episodes on authorship and the many ways the arts are utilised in the field of dementia Care.

Read ‘My Grandma has Dementia’ and Alex’s other books here . 

The Dementia Centre has many books and resources to assist those living with or caring for people with dementia. 

Alex, discusses the impacts of moving his grandma into care, please find here a helpful resource that provides tips on moving a loved one into residential care. 

'Race Against Dementia' as mentioned in this episode, funds innovative dementia research. 

We welcome any feedback to please be sent to the email: [email protected] Feedback allows us to continue to provide an up to date and relevant platform that discusses the needs and lives of those living with dementia and their carers.

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Join Colm in his special episode of ‘The Dementia Podcast’ held in recognition of Australia’s NAIDOC week. NAIDOC or, National Aborigines and Islanders Day Observance Committee week, is held as a celebration of the history, culture and achievements of Aboriginal and Torres Strait Islander peoples. 

Joining us in this episode is HammondCare CEO Mike Baird who shares some introductory remarks and an expert panel that explore the care considerations for First Nations peoples. Members of this panel include; Professor Dawn Bessarab, a Bard/Yindijibarndi woman, Director of the Centre for Aboriginal Medical and Dental Health at the University of Western Australia and lead researcher for the Good Sprit Good Life Centre for Research Excellence at the University of Tasmania,  Stephanie Charlesworth who is Dementia Consultant from SA  that has worked with a number of Aboriginal communities and organisations in the NT, as well as completed her studies at Charles Darwin University in Yolngu Studies and Meghan Heatrick who is also a Dementia Consultant that has extensive career history working in greater Sydney, Alice Springs and other communities and is currently studying a master's in Indigenous health. 

Together this group, discusses the current environment of care of First Nations peoples, what quality of life and care means for First Nations peoples and how this can be different from the general Australian population. 

This episode is sponsored by Dementia Support Australia (DSA).

DSA has developed culturally appropriate communications cards and helpsheets as free downloadable resources for use when caring for a First Nations person living with dementia. 

You can access here the ‘Good Sprit Good Life’ assessment tool developed by Dawn and the team at ‘Aboriginal Ageing Well Research’ as well as information on how to be involved in their research and further validation of this tool. 

The 'Little Red Yellow Black Book' is a suggested resource by the panel as a guide to the rich cultures and histories of Australia’s First Peoples.

This resource provides evidence of the higher susceptibility of dementia in First Nations people as well as other information on First Nations health founded by the Australian Government. 

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Join Colm, Liz Fuggle and Meredith Gresham in their exploration of the influence of dementia design on behaviours and psychological symptoms of dementia. Liz is a UK registered architect who specialises in designing for those living with Dementia and is a design consultant at HammondCare. Meredith Gresham, a trained occupational therapist, is a researcher at the University of New South Wales, in the field of Aged Health Care, Geriatrics and Gerontology. 

This panel examines design in a range of dementia care settings, with a focus on residential care. Together, they examine the relationship between dementia design and good dementia care practices. Overarchingly they share the impact of poor dementia design on the behaviours of those living with dementia through the scope of colour, size, visibility and accessibility. 

The research article ‘Wayfinding for People with Dementia: A Review of the Role of Architectural Design’ provides information on architectural wayfinding design for people with dementia in nursing homes. 

The award-winning report World Alzheimer Report 2020: Design Dignity Dementia: dementia-related design and the built environment,  provides insight into dementia design principles and practice. 

Meredith’s paper, Pre and Post occupancy Evaluation of New Dementia Care Cottages and the paper Clustered domestic residential aged care in Australia: fewer hospitalisations and better quality of life closely examine the design of residential care settings.

Flinders University paper, Clustered domestic residential aged care in Australia: fewer hospitalisations and better quality of life compares size and space.

Thank you to 'Total Construction' for their sponsorship of this episode. 

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Join Colm and Diana Kerr, as they continue their discussion on the importance of music in the care of someone living with dementia. Diana is an experienced practitioner, researcher, educator and trainer in the field of dementia and learning disability and has spent much of her career advocating for the use of music in improving wellbeing of people with dementia. She was previously the Course Director for the MSc in Dementia Studies at the University of Stirling, Research Fellow at the Centre for Research on Families and Relationships at the University of Edinburgh and an associate consultant to HammondCare. 

This conversation unpacks the elements of involving people with dementia in choirs and singing groups. Together they describe how to make these groups dementia friendly, the factors involved in the operation of these groups and how to ensure they are meaningful and engaging for those living and caring for someone with dementia. Diana and Colm share the unique stories of members of these groups which showcase how music is truly integral to the care of a person with dementia and their loved ones. 

This episode is sponsored by HammondCare Publishing . 

Diana’s book 'Singing Groups for people with Dementia' is a guide to setting up and running groups in both community and residential settings. 

The editorial 'The Unforgettables: a chorus for people with dementia with their family members and friends' evaluated a museum program that created a chorus for people with dementia and their family caregivers that rehearsed and performed regularly. 

The research article 'Remini-Sing: A Feasibility Study of Therapeutic Group Singing to Support Relationship Quality and Wellbeing for Community-Dwelling People Living With Dementia and Their Family Caregivers' provides important evidence on the positive effects of singing groups. 

'Does a ‘Singing Together Group’ improve the quality of life of people with a dementia and their carers? A pilot evaluation study' is another piece of evidence that unpacks the effects of singing groups.

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Join Colm, Helen Reeves, head of specialised services at St Giles Hospice and Professor Rod MacLeod, clinical medical advisor to Hospice New Zealand as they define palliation in the context of international dementia care. 

Together they provide a foundational discussion on the importance of palliative care for those with dementia, their carers and loved ones. This conversation highlights the current barriers around recognition and support for those with this life- limiting illness and identifies the changes that need to be considered in this space. 

HammondCare’s 'Palliative Centre' and the HammondCare foundation’s 'The Dreams Project' help terminal patients improve their quality of life. 

The Report 'Hospice enabled dementia care, The first steps' written by hospice UK outlines palliative care in a residential care setting. 

The 'KPMG Palliative Care Economic Report' examines the need for greater investment in palliative care. 

'The Australian Bureau of Statistics' illustrates the increasing impact of dementia in Australia. 

'Palliative Care Australia' media release describes the end of life care discussions occurring in Australia.

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