The Dementia Podcast

Join Associate Professor Colm Cunningham the Director of The Dementia Centre , HammondCare as he introduces the Dementia Podcast.  In this episode, Colm outlines the values, intention and direction of the Dementia Podcast. He summarises this podcast as a whole and identifies the key considerations for current and prospective listeners.  You also have opportunity to hear some background about Colm, his extensive career in supporting people in need and what inspired him to create the Dementia Podcast.  L'Arche International is an organisation that celebrates and supports people with intellectual disabilities. We welcome any feedback on this episode or the Dementia Podcast to be emailed to hello@dementiacentre.com.au 

Join Colm and Associate Professor Steve MacFarlane, Head of Clinical Services at The Dementia Centre as they discuss the clinical and pharmacological considerations in the treatment of those who are experiencing behaviours and psychological symptoms of dementia (BPSD). Through a balanced discussion they explore the benefits of non-pharmacological approaches to care compared to anti-psychotic medication, appropriate medication use, the importance of person- centred Care, and the Dementia Support Australia program (DSA). This episode is sponsored by the HammondCare Foundation.Find out more about the limiting of drugs in the treatment of changed behaviour in dementia in this article , the  Australian Prescriber, and this report.   For information on language and changed behaviour for those with dementia there is the editorial titled ‘Language paradigms when behaviour changes with dementia: BanBPSD’  from the International Journal of Geriatric Psychiatry. For all feedback please email hello@dementiacente.com.au

Join Colm and author of “Talking Sense: Living with sensory changes and dementia”, Agnes Houston MBE as they discuss sensory changes in dementia, its limited awareness as a symptom in the field of dementia, and the journey to the release of her internationally acclaimed book. Together, they explore Agnes’ journey as a campaigner for the voice of people with dementia, her own dementia diagnosis, and her subsequent search for independence and understanding of sensory changes people with dementia experience. “Talking Sense: Living with sensory changes and dementia”, authored by Agnes with Julie Christie outlines Agnes’ experience and provides detailed insight and support to those experiencing sensory changes. As mentioned in this episode, ‘Talking Sense’ is available for free PDF download and for purchase as a print version here and is also available for free audio download. 

Join Colm as he debates ‘white lies’ in dementia care with HammondCare CEO Mike Baird, Chief Operating and Risk Officer Angela Raguz and care staff Donna and Rafaella. This episode explores circumstances when a carer or family member might feel it appropriate to lie to someone with dementia. ‘Would I lie to you’ dissects the term ‘white lies’ and examines how some common care practises are fundamentally lies. Together this panel provides advice through real life examples, demonstrating how each person with dementia has a unique story and therefore, how their care, including the role of ‘white lies’, must be conducted with a deep understanding of the individual and a team approach between family, friends and care staff.This episode is sponsored by Dementia Support Australia (DSA). To find out more about truth in dementia in a resource from the Mental Health Foundation UK 'What is Truth' and the article 'Lying to people with dementia: developing ethical guidelines for care settings' . For a clinical perspective on lies in dementia careyou can read the article from Aging and Mental Health 'Why is dementia different? Medical students' views about deceiving people with dementia' or the research report 'Lying to patients with dementia: Attitudes versus behaviours in nurses'. To broaden your understanding on good or ‘white lies’ there is the article titled 'Telling a 'good or white lie': The views of people living with dementia and their carers' .For all feedback please email hello@dementiacente.com.au

Join Colm and Professor John Swinton, the Chair in Divinity and Religious Studies at the school of Divinity, History and Philosophy at the University of Aberdeen, as they discuss the meaning of being present for somebody with dementia. Together, they explain the principals of presence, its importance to caring for a person with dementia and how it is limited by the attributes of current society. This episode is a commentary on the elements of communication within humanity and their subsequent impact on care. “That is what presence teaches you, how you can be with people in these moments, to learn from that moment that actually there is so much more to this individual than you think there is and to take that learning back into your practise” This episode is sponsored by the HammondCare Foundation . The story of Gladys Wilson and Naomi Feil is an amazing example of the profound impacts of presence in care. To delve further in faith based resources there are the 'Faith for Life' resources. To support those with dementia to connect to faith, especially during this pandemic, there is this helpsheet . John Swinton’s book 'Dementia: Living in the Memories of God' provides useful insight into the relationship between dementia and faith.For all feedback please email hello@dementiacente.com.au

Join Colm and Professor Mary Marshall OBE, professor Emeritus at the University of Stirling where she was the director of the Dementia Services Development Centre for 16 years. Mary now writes and lectures on dementia care, with a focus on design of enabling environments and is a senior consultant with The Dementia Centre. Together they explore Mary’s rich life of activism, social work, care for others and radical strength that resulted in a diverse and pioneering career in dementia care. This episode reflects how a person’s spirit can make an everlasting change. This episode is sponsored by Total Construction . This is a compilation of testimonials for Mary’s career.For all feedback please email hello@dementiacente.com.au

Join Colm and Professor Mary Marshall OBE as they continue their discussion of her pioneering career in improving dementia care services. This episode focuses closely on Mary’s work in dementia design, sharing her learnings of how the built environment impacts the quality of life of a person with dementia and best practice tips on enabling design. Mary’s expertise stems from her sixteen years spent as a professor at the University of Stirling where she was the Director of the Dementia Services Development Centre and her current position as a Senior Consultant with The Dementia Centre. This episode is sponsored by Total Construction The paper 'Dementia Design Principles Review' provides information Dementia design principles and their subsequent evolution. Access videos and information on the Alzheimers Disease International report here . Free Download of  Mary’s books ‘Design for Dementia’, ‘Talking Murals’ and 'Toilet Talk'For all feedback please email hello@dementiacente.com.au

*May contain sensitive material. Content is not direct medical advice, for medical advice please contact your general practitioner regarding your particular situation. Join Colm and an expert panel in their discussion of the appropriate use of medication in the treatment of behaviours and psychological symptoms of dementia. This conversation is framed within the acknowledgment that medication is often used inappropriately in dementia care and notes how in the treatment of behaviours and psychological symptoms of dementia nonpharmacological interventions are the 'gold standard'. Within this, the panel shares their considerations on when the use of psychotropic medications are appropriate and the importance of tailoring medications to the individual, and treatment of specific symptoms. Members of this panel include; Associate Professor Steve MacFarlane, geriatric psychiatrist, and Head of Clinical Services at The Dementia Centre, Professor Susan Kurrle, geriatrician at Hornsby Ku-Ring-Gai Hospital and Curran Professor in Health Care of Older People at the University of Sydney, and John Nadjarian, Special Care Manager at Linden Cottage, HammondCare.This episode is sponsored by Dementia Support Australia (DSA). There are the Clinical practice guidelines and principles of care for people with dementia and the Dementia: assessment, management and support for people living with dementia and their carers guidelines to facilitate understanding of advice for the care of those living with dementia. Research that underpins the discussion includes: When responsive and reactive meet organic? Treatment implications of language use in the era of #BanBPSD Evaluating the clinical impact of national dementia behaviour support programs on neuropsychiatric outcomes in Australia  The use of antipsychotic medication for people with dementia, Time for action.For all feedback please email hello@dementiacente.com.au

Join Colm and Diana Kerr, an experienced practitioner, researcher, educator and trainer in the field of dementia and learning disability who has spent much of her career advocating for the use of music with people with dementia. Diana 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. Together they share the importance of music and advice on how to use music as a tool for connection, reminiscence, support and enjoyment for those living with dementia and their loved ones. This episode is sponsored by HammondCare Publishing . 'Music Remembers Me' is a resource which equips those living with dementia and those who support them with positive, meaningful ways of using music to enjoy their time together. 'Purple Angel' is a dementia awareness program that educates the community and local businesses on how to assist those living with dementia. 'Playlist For Life' is a charity which offers support to those living with dementia and their carers to create a music playlist. This guide breaks down the steps involved in creating a playlist for someone living with dementia.For all feedback please email hello@dementiacente.com.au

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.For all feedback please email hello@dementiacente.com.au

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.For all feedback please email hello@dementiacente.com.au

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. For all feedback please email hello@dementiacente.com.au

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. For all feedback please email hello@dementiacente.com.au 

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: hello@dementiacentre.com.au 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.

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.For all feedback please email hello@dementiacente.com.au

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.For all feedback please email hello@dementiacente.com.au

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.For all feedback please email hello@dementiacente.com.au

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.For all feedback please email hello@dementiacente.com.au

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.Professor Assumpta Ryan is the Professor of Ageing and Health at Ulster University. In this episode she refers to the success of her app ‘The InspireD Reminiscence App’ .Professor Faith Gibson is a friend and colleague of Colm, who has informed much of the work of HammondCare's Dementia Centre . A social worker by training, Faith is a pioneer in the field of reminiscence and life story work. Her most recent publication 'International Perspectives on Reminiscence, Life Review and Life Story Work' and earlier work 'Reminiscence and Life Story Work. A Practice Guide' are informative and instructional resources on reminiscence work.  Together, Colm, Faith and Assumpta provide insight, guidance and shared experience to this episode.The Cochrane Library’s 1998, 2005 and current 2018 review 'Reminiscence therapy for dementia'   displays over time, how  memories and past experiences with other people using tangible prompts evokes memories and stimulate conversation for those living with dementia.'International Journey of Reminiscence and Life Review' publishes original work exploring the nature, function, and application of remembering the personal past within a wide range of research contexts and practice settings.. The  European Reminiscence Network and American International Center for Life Story Innovations and Practise promote best practice in reminiscence work and to share experience across national frontiers.

Join Colm and Mary Jane ‘MJ’ Grant as they discuss deafness and dementia care through their professional and personal experiences. MJ has produced some touching YouTube videos of how she engages and connects with her deaf mother who also has a diagnosis of dementia. In this podcast MJ talks about her journey as a carer of a deaf mother with dementia and importance of connection and support to maintain her mothers and her own wellbeing.  MJ was raised by two deaf parents and has had a career as a professional sign language interpreter, recently opening her own private practise interpreting company ‘Mary Jane Grant Sign Language Interpreting Services’. She has worked with Deaf communities across the U.S. and has taught interpreting at the University of Southern Maine. MJ has experiences working with a wide variety of clientele including community work in the educational and mental health sectors, human services, as well as corporate and theatrical concert settings. In 2020, the State of Maine and Maine's Deaf community awarded MJ the Ginny Hewes-Advocate for the Needs of the Deaf Community. MJ manages her business and advocacy work in between moments at home with her husband, four children, and as a care-giver for her Deaf mother who has dementia. Download the Deafness and Dementia Guides and read more about MJ and The Dementia Centre's work here . MJ is currently looking to produce the USA version of our Deafness and Dementia Guides.  This is MJ's YouTube Channel  YouTube channel which shares much of her story and work. The World Federation of the Deaf and this YouTube video provide fantastic resources for and insight into the deaf community.  Here is a link to the fundraising page for the 'Remember When' Documentary which seeks to share MJ’s story and work.