Treasured Lives

Ultimately we want Tasmanians who live with hoarding and/or challenges maintaining a healthy home to have access to effective support that enables them to age well at home.

This research project is looking into the experiences and needs of families and carers, policy makers and service providers and older Tasmanians with lived experience.

About this project

  • Project aims

    Ultimately we want Tasmanians who live with hoarding and/or challenges maintaining a healthy home to have access to effective support that enables them to age well at home.

    Treasured Lives aims to inform how we can make this to happen by:

    • Understanding the prevalence of these challenges amongst Tasmanians aged 50+, or aged 45+ for people of Aboriginal or Torres Strait Islander heritage;
    • Understanding the experiences, challenges and needs of older Tasmanians living with these issues, their families and carers and the services that seek to support them; and
    • Exploring the social policies and investment in programs that serve older Tasmanians and their families and carers and examining how households are supported in other Australian jurisdictions and internationally.

    For more information about the project please contact the Researcher, Lindsey Fidler, on lindseyf@anglicare-tas.org.au.

  • Governance and ethics

    Project governance

    This research project is being overseen by a Research Reference Group made up of members from:

    • Groups representing those with lived experience: Carers Tasmania, COTA Tasmania, Flourish, Mental Health Families and Friends.
    • Government departments overseeing policy and programs:  Australian Government Department of Health (Aged Care Programs), Tasmanian Department of Health – Mental Health, Alcohol and Drug Directorate and Community Care Reform, Tasmanian Department of Communities, Housing Tasmania, Primary Health Tasmania, Environmental Health – Local Government Association of Tasmania
    • Service providers within aged and adult care, mental health, housing: Anglicare Tasmania, Baptcare, Family Based Care Tasmania
    • Statutory services: Animal welfare – RSPCA, Emergency Services – Tas Fire Service, Environmental health – Huon Valley Council

    For more information about the project please contact the Researcher, Lindsey Fidler, on lindseyf@anglicare-tas.org.au .

    Ethics

    The project has been approved the University of Tasmania’s Human Research Ethics Committee. Project ID 18686.  If you have a complaint to make about how this research is being conducted please contact Research Integrity and Ethics Unit: human.ethics@utas.edu.au | Phone: (03) 6226 6254.

    If you have a complaint to make about any other matter relating to the project, please contact: Ellen Nicholson, SARC Coordinator, on email: ellenn@anglicare-tas.org.au.

  • Want to participate?

    Taking part in the research

    If you are a service provider we would like to talk to you about your experiences of working with people who live with hoarding and/or challenges maintaining a healthy home.

    Service areas may include aged care, community services, mental health, disability services, housing support or housing provider, environmental health, animal welfare and domestic cleaning services.

    Please contact Lindsey Fidler, the Researcher, on lindseyf@anglicare-tas.org.au to arrange an interview or you can complete our online survey.

  • What do we mean by?

    Hoarding is a recognised psychiatric disorder involving challenges with acquiring, sorting and/or discarding items or animals. It may lead to living spaces being unsafe and difficult to use for their intended purposes, such as sleeping, cooking and bathing.  People with such challenges hold significant attachment to items, which makes discarding difficult.  It can also lead to people being socially isolated.

    Challenges maintaining a healthy home describes an unsanitary environment that has arisen from extreme or prolonged neglect and poses health and safety risks to the people and/or animals living there, as well as others within the community. It could be because there is an accumulation of rubbish, decomposing food, grime, dust or mould. This can lead to health challenges for those who live there.

    ‘Older Tasmanians’ within Treasured Lives are those aged 50 and over, or 45 and over if they are of Aboriginal or Torres Strait Islander heritage. It is the point at which the vulnerability of older Tasmanians is recognised in their preparation for older age.

The participants

  • Families and carers

    We have explored the experiences and needs of those caring informally for older Tasmanians living with hoarding and/or challenges maintaining a healthy home.

    A literature review focuses on what we know about those living with this issue, what we know about the experiences of families and carers, and a scan of policy, programs and practice in other Australian jurisdictions and internationally that support families and carers of people living with hoarding and/or challenges maintaining a healthy home.

    Full report Summary report
  • Policy and services

    This component of the research will explore the current policy and service environment that supports older Tasmanians to age well at home when they are living with hoarding and/or challenges maintaining healthy home.

    This will include an examination of aged care provision, older adult services including disability supports, Home and Community Care, and connected services such as housing and homelessness support, mental health services, GPs and healthcare. It will also explore the roles of statutory agencies, such as the emergency services, local government environmental health, animal welfare and the Guardianship Board. Investigations will be through a series of interviews with staff working in these areas.

    The literature review will focus on policy, programs and practice in other Australian jurisdictions and internationally that support people living with this issue. There will be a particular focus on supports for older people.

    Would you like to be involved?

    If you are a service provider we would like to talk to you about your experiences of working with people who live with hoarding and/or challenges maintaining a healthy home.

    Service areas may include aged care, community services, mental health, disability services, housing support or housing provider.

    Please contact Lindsey Fidler on lindseyf@anglicare-tas.org.au to arrange an interview or complete our online survey.

  • Older Tasmanians

    The project plans to interview a small sample (3 to 5) of people aged 50 or over (or 45 or over if they are of Aboriginal or Torres Strait Islander heritage) who have lived experience of hoarding and/or challenges maintaining a healthy home. We will explore their experiences, challenges and desired goals for ageing.

Publications and events

Publications

Phase 1 Reports

This is the first report from the Treasured Lives project, which explores the often hidden or overlooked experiences of families and informal carers who support older people living with hoarding and challenges maintaining a healthy home.

Events

Webinar – Treasured Lives: Tasmanian Carers Supporting Hoarding

Facilitated by TasCOSS CEO Adrienne Picone, this webinar explored the nature of challenges of living with hoarding and what’s needed to ensure we can support older Tasmanians living with hoarding to age well at home. Participants had the first opportunity to hear our lead Researcher, Lindsey Fidler, share insights from Treasured Lives.  It also offered a space to hear from Families and Carers supporting older people living with hoarding or challenges maintaining a healthy home and Mental Health Families and Friends CEO, Maxine Griffiths and Carers Tasmania’s Executive Policy Officer, Dr Christine Materia.

Summary Report Full Report Presentation slides

 

Resources

This is a selected list of resources that may be useful for those living with hoarding and/or maintaining a healthy home (CMHH), their families and carers, and those working with these two groups.

  • Digital resources

    Name Target group Run by Description
    r/hoarding People living with hoarding

    Families and carers

    Service providers

    Hosted by large social media platform Reddit, run by volunteer moderators. 34,000 registered members. Public discussion forum offering advice and support. Has a wiki with comprehensive info and resources.
    International OCD Foundation People living with hoarding

    Families and carers

    Service providers

    Non-profit promoting awareness and providing resources and support for people affected by Obsessive Compulsive Disorder and associated conditions. Website with information and resource directory.
    Maroondah Hoarding and Squalor Network People living with hoarding

    Families and carers

    Service providers

    Forum for agencies and community groups in the City of Maroondah, Victoria, Australia. Excellent introductory articles. Comprehensive resource guide for Maroondah locals and others
    Pathways through the maze People living with hoarding

    Families and carers

    Service providers

    Catholic Community Services, New South Wales, Australia Basic information, resources and training
    Hoarding Disorders UK People living with hoarding

    Families and carers

    Service providers

    Hoarding Disorders UK Resources and information for people affected by hoarding.
    Children of Hoarders Families and carers Volunteer grassroots U.S. non-profit Biggest and best known online support for family members of hoarders. Resources, information and support.
  • Audio visual resources

    Name Target group Author Description
    Hoarding Disorder playlist People living with hoarding

    Families and carers

    Service providers

    International OCD Foundation A Youtube playlist of short (2-3 minute) videos explaining hoarding disorder.
    Clutter Chronicles People living with hoarding

    Families and carers

    Service providers

    Lori Koppelman Free podcast. An ongoing conversation with Mary, who calls herself a recovering hoarder.
    The Hoarding Solution Podcast People living with hoarding

    Families and carers

    Service providers

    Tammi Moses Free podcast. An exploration of how the community can approach this issue with compassion, kindness & awareness.
    Helping hoarders let go People living with hoarding

    Families and carers

    Service providers

    ABC Radio Archived radio broadcast. An interview with Jessica Grisham, a clinical and research psychologist at the University of NSW.
    The psychology of hoarding People living with hoarding

    Families and carers

    Service providers

    ABC Radio Archived radio broadcast. Interviews with Professor Randy Frost (co-author of Buried in Treasures), a support worker, and two people who hoard.
  • Books

    Title Target group Author Description
    Buried in Treasures People living with hoarding

    Families and carers

    Service providers

    David Tolin, Randy Frost and Gail Steketee Self-help treatment program
    Stuff: Compulsive hoarding and the meaning of things People living with hoarding

    Families and carers

    Service providers

    Randy Frost and Gail Steketee Case studies and exploration of the psychology of hoarding
    Digging Out: Helping your loved one manage clutter, hoarding and compulsive acquiring Families and carers Michael Tompkins and Tamara Hartl Practical advice focusing on harm reduction and salvaging relationships
    Children of Hoarders: How to minimize conflict, reduce the clutter, and improve your relationship Families and carers Fugen Neziroglu and Katharine Donnelly Aimed at helping adult children of hoarders manage their own emotions. Uses Cognitive Behavioural Therapy, mindfulness etc.
    Understanding hoarding: Reclaim your space and your life People living with hoarding Jo Cooke An explanation of what hoarding is and an 8-step plan with practical steps to tackle the problem
    Overcoming hoarding: A self-help guide using cognitive behavioural techniques People living with hoarding Satwant Singh, Margaret Hooper and Colin Jones Offers support, guidance and Cognitive Behavioural Therapy activities to help overcome hoarding
    Reclaim your life from hoarding People living with hoarding Eileen Dacey Workbook with case studies, self-care strategies and an action plan
    Dirty Secret: A daughter comes clean about her mother’s compulsive hoarding People living with hoarding

    Families and carers

    Service providers

    Jessie Scholl Memoir by the daughter of a parent living with hoarding behaviour
    Coming Clean People living with hoarding

    Families and carers

    Service providers

    Kimberley Rae Miller Memoir by the daughter of a parent living with hoarding behaviour
    White Walls: A memoir about motherhood, daughterhood and the mess in between People living with hoarding

    Families and carers

    Service providers

    Judy Batalion Memoir by the daughter of a parent living with hoarding behaviour
    Lessons in letting go: Confessions of a hoarder People living with hoarding

    Families and carers

    Service providers

    Corinne Grant Memoir by an Australian living with hoarding behaviour
    Mess: One man’s struggle to clean up his house and his act People living with hoarding

    Families and carers

    Service providers

    Barry Yourgrau Memoir and exploration of hoarding by a person living with hoarding behaviour
  • Training

    Name Target group Run by Description
    Hoarding Home Solutions Family & Friends Families and carers Hoarding Home Solutions Online. Workbooks, video lessons, real life stories and resources and tools. 12 x 1-hour sessions. Fee to be paid
    Understanding and treating hoarding disorder Families and carers

    Service providers

    University of Sydney Online; one 8-hour session. Covers etiology, assessment and therapy (Cognitive Behavioural Therapy). Fee to be paid
    Virtual Hoarding Awareness Training Families and carers

    Service providers

    Hoarding Disorders UK Online. 4.5 hours over one day. Covers understanding hoarding, how to help and further knowledge. An advanced course is also available. Fee to be paid
    Helping People Who Hoard: Alternatives to nagging, pleading, and threatening Families and carers Michael Tompkins via IOCDF Free 44-minute Youtube video. Covers dealing with people who refuse help and repairing damaged relationships.
    Family as Motivators Families and carers Lifeline Victoria One 2-hour session per week for 10 weeks. ‘How to encourage a person with hoarding disorder to seek help and look after your own wellbeing.’ Free via GP referral
    Hoarding and squalor training in effective service responses Families and carers

    Service providers

    Catholic Community Services Full day workshop. Unclear whether online or in person. Half day introductory workshop also available. Cost unclear.
    Understanding animal hoarding Families and carers

    Service providers

    Animal Courses Direct Online. Study time 10 hours. Fee to be paid
    How to help someone who hoards Families and carers

    Service providers

    Hoarding Home Solutions Free online. 40 minute video.
  • Support groups

    Name Target group Platform Run by Description
    Hoarding and clutter support group People living with hoarding Zoom ARC Victoria Free peer-led mutual self-help support group.
    Virtual Buried in Treasures People living with hoarding Zoom Mutual Support Consulting Paid, facilitated series of workshops based on Buried in Treasures. Must have a copy of the book.
    Online Hoarding Support Groups People living with hoarding chat Steri-Clean One group includes professionals, the other is peer only
    Clutterers Anonymous virtual meetings People living with hoarding Phone and Zoom Clutterers Anonymous Virtual meetings following the Alcoholics Anonymous methods and traditions
    Hoarding/Cluttering Support Group People living with hoarding Private Facebook group Volunteer members Emotional, educational and psychological support, and a resource for understanding hoarding and cluttering
    The Clutter Movement Individual Support People living with hoarding Private Facebook group Unknown A peer community working together to share knowledge, experience, and ideas to affect sustainable change amongst themselves.
    Adult Children of Hoarders Families and carers Private Facebook group Volunteer members ‘A place to get support, share experiences and feelings, and sometimes laugh at the absurdity of it all – without judgment’
    Family and Friends of Hoarders Support Group Families and carers Private Facebook group Volunteer members ‘A safe place to be able to let out the frustration of living with a hoarder.’
    MYCOHP Families and carers Groups.io Volunteers ‘A safe, understanding, peer support group for minors and youth living in hoards.’
    Children of Hoarders Families and carers Groups.io Volunteer members Peer support and information sharing.
    r/hoarding People living with hoarding

    Families and carers

    Service providers

    Reddit Volunteer members Public discussion forum offering advice and support.
    r/ChildofHoarder Families and carers Reddit Volunteers Public discussion forum offering advice and support.
    Arafmi Carer Support Group Families and carers Zoom Arafmi A wider support group of families and carers to talk about their feelings, explore alternative ways of coping, offer mutual support, or listen and observe.
    Safe Spaces Families and carers Face to face and Zoom Mental Health Families and Friends Tasmania A wider support group of Tasmanian families and carers to share experiences with others who understand.
  • Australian professional support services

    Name Target group Location Service About
    Fiona Mason, Ace of Space, 0437 772 097 People living with hoarding Hobart Professional organiser Works with people wanting to declutter or downsize, and also works with NDIS and MyAgedCare participants. Has training in hoarding.
    Dr Bethany Lusk, Archer Street Health, 0361 242 222 People living with hoarding Hobart Clinical psychologist Has an interest in working with clients experiencing hoarding problems and has completed training
    Dr Jan Eppingstall, Stuffology People living with hoarding Melbourne Psychologist Hoarding specialist offering therapy over Zoom as well as in-person
    Julie Jensen, Changes in Between, 0411 241 005 People living with hoarding Melbourne Counsellor Primarily a grief counsellor with training and interest in hoarding. Offers phone and Zoom therapy as well as in person
    George Turnure, Website, 0413 674 328 People living with hoarding Sydney Clinical Psychologist Works frequently with hoarding and offers multiple telehealth options
  • Download this list as a PDF

    Treasured Lives resource list