DemTalks

The Alzheimer Society of Ireland

DemTalks, Our Stories, Our Voices, Series One. Created by The Alzheimer Society of Ireland and proudly sponsored by Hidden Hearing DemTalks, Our Stories, Our Voices is a podcast series by The Alzheimer Society of Ireland. Series One is produced by the Dementia Carers Campaign Network (DCCN) and is dedicated to amplifying the voices of family carers and supporters of people living with dementia. The DCCN is an advocacy group of people who have experience caring for or supporting someone living with dementia, and DemTalks Series One features topics such as carer identity, homecare, hearing loss and dementia, and caring in the LGBTQ+ community. The podcast is devised by Clodagh Whelan, Advocacy Manager, and Series One is hosted by Judy Williams, Advocacy, Engagement and Participation Officer at The Alzheimer Society of Ireland. Judy is responsible for the co-ordination and development of the DCCN. The Alzheimer Society of Ireland is the national leader in advocating for and providing dementia-specific supports and services. There are over 64,000 people living with dementia in Ireland and one in ten people diagnosed with dementia in Ireland is under 65. www.alzheimer.ie Helpline: 1800 341 341 www.hiddenhearing.ie

Episodes

  1. 16/06/2024

    Respite and moving to residential care

    Participants in this episode:   Triona Keane – Member of the Dementia Carers Campaign Network.  Triona is originally from Cork but now lives in Dublin with her husband. Triona’s Dad, John, was diagnosed with Lewy Body Dementia in May 2022. John was cared for at home by his loving wife, his sons and his daughter, with his brothers and sister also providing support. While in hospital for something else, hospital staff deemed John unsuitable to be cared for at home and John was moved to residential care in October 2022. Triona emphasises that just because your loved one has moved to a nursing home, it does not mean your caring journey stops. New challenges arise, new issues present themselves, and the worry doesn’t stop.   Carmel Geoghegan – Member of the Dementia Carers Campaign Network.  Carmel has a background in community development and has been advocating for and involved in devising innovative community responses to issues since the early 1990s. Carmel became primary carer to her mum Angela in 2010. Angela received a very late diagnosis of vascular/frontal temporal dementia and Carmel cared for her mother until the end of life. This life changing experience began Carmel’s advocating for the voice of persons with a disability and the primary carer/family. She established Dementia Ireland Empowering Communities with an emphasis on education to reduce the misunderstanding attached to a diagnosis and empower those affected to voice their needs and fears and to be involved in the decisions that affect them. This advocacy work centres on the importance of including the voice of the person in all interactions relating to them.   Nora Owen – former Minister for Justice.  Nora Owen was a politician in Ireland for more than 20 years, starting with her election to the Dublin County Council in 1979. She was elected to the Dáil in 1981-2002 where she chaired the Parliamentary Overseas Aid Committee and vice-chaired the Foreign Affairs Committee. She also served as Spokesperson for the Opposition in several portfolios. She was appointed Deputy Leader of the Fine Gael Party in 1993-2001 and was Minister of Justice from 1994 to 1997.  Nora has presented Midweek on TV3 and contributes regularly to TV and radio programmes.  Nora’s husband Brian was diagnosed with vascular dementia in 2005, and Nora cared for Brian at home until he moved to residential care in 2018. Sadly, Brian passed away in 2020.    Norma Sheehan – former Director of Nursing at St Joseph’s residential home in Dublin  RGN; RGM; Dip. Man.; BNS; MSc Health Services Man  Norma has nearly 40 years of general nursing experience, mainly in the acute sector. She worked in ICU and the Liver Transplant Unit in St Vincent’s University Hospital in Dublin, and she managed the Acute Care of the Elderly Unit in St Vincent’s for 3 years. She was Assistant Director of Nursing/Medical Nurse Manager in Wexford General Hospital for 6 years. In 2012, Norma became Director of Nursing in St Joseph’s Shankill, in Dublin, a residential home for 60 people living with dementia. After Norma’s arrival, St Joseph’s underwent a major transformation both culturally and environmentally. Moving from a traditional style, medical model nursing home into six new homes or ‘lodges’, Norma introduced a person-centred, psychosocial model of care; the Dementia Care Matters; Butterfly Model of Care. The primary focus in St Joseph’s is on quality of life and the person’s feelings and wellbeing. Norma retired in March 2021. The Alzheimer Society of Ireland Helpline: 1800 341 341  helpline@alzheimer.ie  www.alzheimer.ie   Hidden Hearing: 1800 882 884  www.hiddenhearing.ie    Book recommended during this episode of the podcast – Dementia and Sensory Challenges by Agnes Houston. The Forget Me Nots Choir www.forgetmenots.ie

    57 min
  2. 25/10/2023

    Delivery of a Diagnosis

    Participants in this episode:   Tony McIntyre – member of the Dementia Research Advisory Team member and member of the Dementia Carers Campaign Network. Tony lives in Dublin with his wife Mary. Mary was diagnosed with Alzheimer’s Disease in 2015, but Mary felt that she had the disease for at least two years before that.  Tony and Mary are passionate advocates, working to highlight the issues affecting carers and people with dementia. As members of the Dementia Research Advisory Team, Tony and Mary use their lived experience of dementia to contribute to dementia research in a Person Public Involvement (PPI) capacity. Through his considerable PPI work, and supported by The Alzheimer Society of Ireland, Tony has supported a number of research projects, presented at dementia conferences, and contributed to workshops and training. Tony is also a member of the Dementia Carers Campaign Network, and Mary is a member of the Irish Dementia Working Group, advocacy groups supported by The Alzheimer Society of Ireland (The ASI).   Alison McCarthy – member of the Dementia Research Advisory Team. Alison is from Limerick and is a family carer to her mother Mary who was diagnosed with Early-Onset Alzheimer’s in November 2014 at the age of 54. Alison currently splits her time between working in the Events sector in Dublin and her home in Limerick where her Mom is still living with her Dad. Alison began to get more involved with The ASI during the pandemic, joining the Dementia Research Advisory Team where she takes part in a variety of PPI (Person Public Involvement) research activities and consultations. Alison is a steadfast advocate for the work of The ASI and always loves getting involved in fundraising campaigns, especially the Memory Walk which she and her partner Bibek have taken part in annually since 2019.   Úna Crawford O’Brien, Actress. Úna joined the cast of Fair City twenty-five years ago as Renee Phelan. During that time, Úna has also toured the country with the plays Love Letters, Best Man, Grumpy Old Women, Menopause the Musical and Halcyon Days. Earlier this year, Úna took to the stage once more, alongside Bryan Murray in Love Letters. She also acted as Bryan’s Personal Assistant during the run of An Old Song Half Forgotten at the Peacock Theatre.   Matthew Gibb – Director, Dementia Services Information and Development Centre (DSiDC). Matthew was first appointed to the DSiDC in June 2003 as Medical Social Worker, and he took on the role as Director of the Centre in 2018. He has a professional background in Social Work practice, and a Masters degree in Social Policy and Social Work Studies from the London School of Economics. Matthew has a wealth of experience working with older people, carers, and people with sensory and physical disabilities.   www.alzheimer.ie The Alzheimer Society of Ireland Helpline: 1800 341 341   The Dementia Research Advisory Team https://alzheimer.ie/creating-change/research/ppi/   Dementia Adviser Service – The Alzheimer Society of Ireland https://alzheimer.ie/service/dementia-adviser/   Irish Dementia Working Group www.alzheimer.ie/creating-change/ways-to-have-your-voice-heard/irish-dementia-working-group-3/   Dementia Services Information and Development Centre, St James’s Hospital https://dementia.ie/   Family Carers Ireland https://familycarers.ie/   Model of Care for Dementia in Ireland https://www.hse.ie/eng/services/publications/olderpeople/model-of-care-for-dementia-in-ireland.pdf   www.hiddenhearing.ie

    48 min
  3. 21/09/2023

    Hearing and Brain Health

    Participants in this episode: Dr Eithne Heffernan - member of the Dementia Carers Campaign Network (DCCN). Dr Eithne Heffernan cared for a close family member with dementia.   Eithne joined the DCCN in 2021, and has been involved in policy consultations, focus groups and presenting at conferences.  Eithne is a member of the Dementia: Understand Together Campaign Working Group, facilitated by the HSE and the National Dementia Office. She is a member of the INTERDEM Academy Management Board, which supports training and development of junior dementia researchers in Europe. Eithne is from Mayo and is a healthcare researcher. Currently, she is a Senior Research Fellow at the University of Nottingham, examining the needs of people living with co-existing dementia and hearing loss and their families. Dr Sabina Brennan – neuroscientist, psychologist, brain health expert, author, and former television actress. Dr Sabina Brennan is a prominent Irish neuroscientist, psychologist, and author. Sabina’s books include Beating Brain Fog and 100 Days to a Younger Brain, both Irish Times No1 bestsellers. Sabina presents the Super Brain podcast, where she talks to an eclectic, inspiring mix of guests and shares practical tips on transforming your everyday brain into a healthy, happy Super Brain. Dr Brennan directed a dementia research program at Trinity College Dublin for seven years and she led Brain Fit, a large-scale research study examining the relationship between brain health, lifestyle, genomics and dementia risk. Sabina represents Ireland on the Scientific and Medical Advisory Panel for Alzheimer’s Disease International and volunteers on several committees and advisory boards. She has advised the Irish Government and the All-Party Parliamentary Group on Longevity in the UK on brain health, dementia risk reduction and healthy ageing. Sarah Sheehan – Chief Audiologist at Hidden Hearing Ireland. HE Dip HAA, M.I.S.H.A.A, BSc (Hons) Project Management, BSc Engineering, MSc in Hearing, Balance & Communication​. Sarah Sheehan joined Hidden Hearing in 2018 as an audiologist and is a member of Hidden Hearing’s Learning & Development team. She is committed to providing audiology education and keeping up with current audiology trends. Sarah practised audiology for almost 12 years prior to joining Hidden Hearing, gaining experience in diagnostic audiology, irrigation & micro-suction procedures. The provision and application of aural rehabilitation is Sarah’s passion. As technology grows, Sarah ensures that Hidden Hearing is building and nurturing centres of excellence, and that the team has the competency and skills to ensure the best patient experience.  Sarah believes that audiology standards, delivery of service care, education and awareness of hearing health, and understanding the impact of hearing loss on quality of life, are expanding, and this will help reshape the way people view and address hearing loss. The Alzheimer Society of Ireland Helpline: 1800 341 341 helpline@alzheimer.ie www.alzheimer.ie Hidden Hearing: 1800 882 884 www.hiddenhearing.ie Irish Society of Hearing Aid Audiologists https://www.ishaa.ie/ http://superbrain.ie/ The Alzheimer Society of Ireland Family Carer Training www.alzheimer.ie/about-dementia/family-carer-training/ Books by Dr Sabina Brennan: 100 Days to a Younger Brain Beating Brain Fog Brain Gym: 40 workouts to boost your brain health The Neuroscience of Manifesting – due to be published in 2024 Destress Report 2017 http://www.sabinabrennan.ie/2018/06/destress/ ‘Test Your Ears at 50 Years’ National Campaign for Better Hearing www.hiddenhearing.ie World Health Organization https://www.who.int/ An important article on brain health and dementia prevention: Dementia prevention, intervention, and care: 2020 report of the Lancet Commission https://www.thelancet.com/article/S0140-6736(20)30367-6/fulltext

    48 min
  4. 14/08/2023

    Post Diagnostic Supports

    Participants in this episode: Aisling Harmon – committee member of the Dementia Carers Campaign Network. Aisling returned from the UK in 2006 to support her parents. Having been diagnosed with Vascular Dementia in 2002 and Alzheimer’s Disease in 2005, her father Patrick was cared for at home by his wife Carmel, who was herself a leukaemia survivor. Carmel sadly developed Parkinson’s Disease in 2013, and Patrick moved to residential care until his passing in 2017. Carmel wished to be cared for at home where she remained despite receiving a dementia diagnosis in 2019. Aisling retired from practice as an osteopath during the Covid pandemic to care full time for Carmel who sadly passed away in February 2023.  Aisling is a passionate advocate for family carers and has a particular interest in representing the carer voice at research and advocacy events. Aisling has presented at the Alzheimer Europe conference in 2022 and she and her mother Carmel supported The Alzheimer Society of Ireland’s Tea Day 2022.  Aisling has been a Dementia Carers Campaign Network (DCCN) member for many years and is currently on the committee. She regularly supports media engagements, takes part in political advocacy, participates in focus groups and policy consultations, and supports other ASI activities. Mike Hanrahan - Songwriter, musician, author, Atlantic Fellow for Equity and Brain Health at Trinity College Dublin.  Mike has been at the forefront of Irish music for four decades, as a writer, singer and musician with Stockton’s Wing, Ronnie Drew, Eleanor Shanley and many more. His song, A River Rolls On, inspired by his mother’s journey through Vascular Dementia was recorded with The Forget-Me-Nots choir, a dementia/age friendly choir from Dublin. He is currently studying Brain Health and Equity at the Global Brain Health Institute at Trinity College, and he is working on a book of short stories on dementia. He is a published author. His memoir, ‘Beautiful Affair, A Journey in Music, Food and Friendship’ was shortlisted for the An Post National Book Awards in 2019. Kathleen Farrell - member of the Irish Dementia Working Group. Katheen Farrell is 70 years old. In 2021 Kathleen was diagnosed with Lewy Body Dementia with Parkinson’s. Since her diagnoses Kathleen has decided to speak openly about living with Lewy Body Dementia.   Kathleen joined the Irish Dementia Working Group (which is supported by The Alzheimer Society of Ireland) in 2022, and she has decided to become an advocate for other people living with dementia. Kathleen hopes that by sharing her story and experiences, the future for other people being diagnosed with dementia in Ireland may improve. www.alzheimer.ie The Alzheimer Society of Ireland Helpline: 1800 341 341 Irish Dementia Working Group www.alzheimer.ie/creating-change/ways-to-have-your-voice-heard/irish-dementia-working-group-3/ www.hiddenhearing.ie

    40 min
  5. 14/07/2023

    Homecare

    DemTalks, Our Stories, Our Voices, Series One Created by The Alzheimer Society of Ireland and proudly sponsored by Hidden Hearing. Participants in this episode:   Susan Crampton - committee member of the Dementia Carers Campaign Network. Susan Crampton lives in Shannon in Co Clare. She was a supporter, carer and advocate for her late mom, Anne, who lived with mixed vascular and Alzheimer's dementia. Susan was caring for her mom from 2010 until Anne’s passing in 2017. Susan is a committee member of the Dementia Carers Campaign Network (DCCN) supported by The Alzheimer Society of Ireland. She has been involved in policy and clinical guideline consultations and focus groups, political advocacy, speaking at events and conferences, and raising awareness of the issues affecting carers of those living with dementia, including using the arts as an innovative way of communicating to an audience outside the dementia community.   Megan O’Connor - makeup artist. Megan O'Connor lives in County Leitrim and helped to care for her mum, Anne Marie, who was diagnosed with Frontotemporal Dementia in 2017. Anne Marie was in her early 50s when she started showing signs and a few years later she got her diagnosis. Sadly, Anne Marie passed away in February 2022. Prior to her mum’s illness, Megan had worked to build a following on Instagram through her love for all things creative and makeup, and she also went on to be a contestant on Glow Up Ireland. As Anne Marie’s illness progressed, makeup took more of a back seat over time, but Megan felt it was valuable to use her platform for good and to share about her journey of caring for her mum in the hope that it could help someone in a similar situation.   Adrienne McAvinue - Homecare Coordinator, The Alzheimer Society of Ireland. Adrienne joined The Alzheimer Society of Ireland in 2001 and has been working with people living with dementia and their families in different capacities since then. Currently Adrienne manages the Homecare for South Dublin alongside her colleague Frances Redmond. She also co-facilitates a support group for carers of people with a diagnosis of dementia who are under 65 years old, and Adrienne facilitates two social clubs in South Dublin that bring together people living with dementia and their loved ones in a social environment. As well as her professional life, Adrienne has personal experience of dementia in her own family, and she feels this gives her the position of insight from both sides, of delivering and also of trying to source services for people living with dementia. Adrienne says, "I can honestly say that I love my job and as long as I can, I will advocate for people living with dementia and their families."   www.alzheimer.ie The Alzheimer Society of Ireland Helpline: 1800 341 341   www.hiddenhearing.ie

    47 min
  6. 14/06/2023

    Your Identity as a Carer

    DemTalks, Our Stories, Our Voices, Series One. Created by The Alzheimer Society of Ireland and proudly sponsored by Hidden Hearing Participants in this episode:   Danielle Lennon – member of the Dementia Carers Campaign Network Danielle lives in Dublin and cared for her Mam, Caroline, who was diagnosed with cancer in 2021 and later with dementia in 2022. Sadly, Caroline passed away in May 2022. Danielle joined the Dementia Carers Campaign Network (DCCN) in July 2022 in the hope of using her own experience caring for her Mam to help improve supports and services for those affected by dementia and their families in the future. Pamela Laird – Entrepreneur and beauty expert Pamela is a beauty expert and entrepreneur and an Alzheimer Society of Ireland ambassador. She is the creator of beauty brand Moxi Loves. Pamela pitched her business on Dragons Den Ireland where she received an offer of investment from three Dragons, and she took part in the Apprentice UK, where she came third. Pamela’s father, Sylvester, was diagnosed with dementia in 2016 and Pamela and her mother looked after her father at home. In 2019 they received carer services to help with her dad’s care. However, when Covid-19 hit in 2020, Pamela’s mother cocooned with Sylvester and became his sole carer. Sylvester was in the motor trade and he was also a talented cook, gardener, and builder, so Pamela says it has been very difficult to see her dad change since his dementia diagnosis.   Dr Michelle Kelly - Associate Professor of Psychology at the National College of Ireland Michelle is an Associate Professor of Psychology at the National College of Ireland. She holds an Honours Degree in Psychology and a doctorate in Behaviour Analysis and Therapy, both from Maynooth University. She is also an Accredited Cognitive Stimulation Therapy Trainer with University College London. Her research focuses on early interventions for people with dementia, and behavioural approaches to improving brain health for older adults.    www.alzheimer.ie The Alzheimer Society of Ireland Helpline: 1800 341 341   www.hiddenhearing.ie   The Alzheimer Society of Ireland Family Carer Training www.alzheimer.ie/about-dementia/family-carer-training/   Irish Dementia Cafe Network www.dementiacafe.ie/   Book recommended during this episode of the podcast – The Happiness Trap by Russ Harris

    44 min
  7. 14/06/2023

    Caring in the LGBTQ+ Community

    DemTalks, Our Stories, Our Voices, Series One. Created by The Alzheimer Society of Ireland and proudly sponsored by Hidden Hearing Participants in this episode:   Paddy Crosbie, Committee member of the Dementia Carers Campaign Network Paddy lives in Dublin and cared for his husband Derek, who was diagnosed with Early-Onset Alzheimer’s Disease in July 2012, when Derek was 58. Sadly, Derek passed away in November 2021. Prior to retiring early to care for Derek, Paddy worked in local government.   Philip Connaughton, Choreographer and performer Philip is a Dublin based choreographer and performer. He creates for dance, theatre, and opera. His three most recent works - Assisted Solo, Mamafesta Memoralising, and Love Songs, were all inspired by his relationship with his mother who was living with dementia and who he cared for until she passed away in August 2022.   Zoe Hughes, Senior Policy & Research Officer, Care Alliance Ireland Zoe joined Care Alliance Ireland in January 2015. She has qualifications in Social Work, Social Policy and Disability Studies, and her past work has included working with a number of academic and voluntary sector organisations. Zoe has a particular interest in the topic of diversity within caring, along with inclusive and participatory research methods.   James O’Hagan, LGBT Champions Programme Manager, LGBT Ireland James is a podcaster, writer, and activist, passionate about giving voice to marginalised communities and exploring intersectional identities. His work as an LGBTI+ activist with LGBT Ireland, the national support service for LGBTQ+ people in Ireland, focuses on ensuring older members of the LGBTQ+ community are supported and enabled to flourish and enjoy inclusive, healthy, and fulfilling lives as part of their communities.    www.alzheimer.ie The Alzheimer Society of Ireland Helpline: 1800 341 341   www.hiddenhearing.ie   www.carealliance.ie   www.lgbt.ie

    52 min

About

DemTalks, Our Stories, Our Voices, Series One. Created by The Alzheimer Society of Ireland and proudly sponsored by Hidden Hearing DemTalks, Our Stories, Our Voices is a podcast series by The Alzheimer Society of Ireland. Series One is produced by the Dementia Carers Campaign Network (DCCN) and is dedicated to amplifying the voices of family carers and supporters of people living with dementia. The DCCN is an advocacy group of people who have experience caring for or supporting someone living with dementia, and DemTalks Series One features topics such as carer identity, homecare, hearing loss and dementia, and caring in the LGBTQ+ community. The podcast is devised by Clodagh Whelan, Advocacy Manager, and Series One is hosted by Judy Williams, Advocacy, Engagement and Participation Officer at The Alzheimer Society of Ireland. Judy is responsible for the co-ordination and development of the DCCN. The Alzheimer Society of Ireland is the national leader in advocating for and providing dementia-specific supports and services. There are over 64,000 people living with dementia in Ireland and one in ten people diagnosed with dementia in Ireland is under 65. www.alzheimer.ie Helpline: 1800 341 341 www.hiddenhearing.ie