Treasured Lives

We want Tasmanians who live with hoarding or have challenges maintaining a healthy home to have access to effective support so they can age well at home.

This research project looks into the experiences and needs of Tasmanian families, carers, and service providers who support older people living with hoarding or challenges maintaining a healthy home.

About this project

  • Project aims

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

    Treasured Lives shows us how this can happen by:

    • Understanding what we know about how many older Tasmanians are living with these challenges;
    • Understanding what it’s like for their families, carers and the services that work with them, and what they need to support people living with these challenges;
    • Beginning to understand what it’s like for people who live with these challenges, through the perspectives of the people who try to support them;
    • Looking at how people are supported elsewhere in Australia and internationally.

    Treasured Lives received ethics approval to talk directly to older Tasmanians who live with these challenges. Unfortunately, the Tasmanian Department of Health does not currently have the capacity to work on this with us. We strongly recommend that older people who live with these challenges are included in any future consultations about supports and services.

    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. It includes members from:

    • Carers Tasmania
    • COTA Tasmania
    • Flourish
    • Mental Health Families and Friends.
    • 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
    • Local Government Association of Tasmania
    • Anglicare Tasmania
    • Baptcare
    • Family Based Care Tasmania
    • RSPCA
    • Tas Fire Service
    • 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: Mary Bennett, SARC Coordinator, on email: maryb@anglicare-tas.org.au.

  • 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’ in Treasured Lives are people aged over 50, or 45 if they are Aboriginal or Torres Strait Islander.

Interview with Lindsey Fidler

In this video we speak with Social Researcher, Lindsey Fidler about the Treasured Lives project.

We discuss:

  • the need for this research
  • the risks to older people
  • how Tasmania can tackle such a complex issue.

Research findings

  • Background

    It is estimated that 2.5% of the adult population live with hoarding. This means about 5,000 older Tasmanians might have hoarding behaviour.

    It is estimated that one household with hoarding could cost the government over $56,000 in emergency care and legal matters. If that household is given effective specialist supports, the cost falls significantly.

    This means the Tasmanian government could be spending over $200m on older Tasmanians living with hoarding or CMHH.  If resources were spent on effective specialist supports, we estimate the cost would fall to under $800,000 per year, with additional supports through Primary Health Tasmania.

    Treasured Lives has looked at what Tasmania needs to deliver effective support for these households. The first phase of the project looked at the experiences and needs of families and carers. The second phase has looked at how services currently try to provide support and deal with problems. Together they provide Tasmania’s first in-depth insights into hoarding and CMHH.

  • Phase 1 Families and carers

    In the first part of Treasured Lives, we talked to the families and carers of older Tasmanians who have challenges with hoarding or maintaining a healthy home.

    The report focuses on what we know about people who live with this issue and the experiences of their families and carers. It examines how to help families and carers and what’s being done interstate and internationally.

    Full Report Summary Report Presentation Slides
  • Phase 2 Policy and services

    This part of the research explored what Tasmanian services need to help older people who have challenges with hoarding or maintaining a healthy home.

    It looked at aged care and disability support, and other services like housing and mental health. It also explored the role of statutory agencies such as emergency services, local government environmental health and animal welfare organisations.

    Staff working in these areas were interviewed to ask what it’s like for them. They reported that they had nowhere to refer their clients to and were sometimes unable to work with them due to workplace health and safety issues. These are some of the most vulnerable older Tasmanians, but there is no safety net to help them age well.

    The report also looked at policy, programs and practice in other parts of Australia and internationally that support people living with this issue, particularly older people.

    Full Report Full Report (Word) Summary report Summary report (Word)
  • What does Tasmania need?

    We recommend the Tasmanian Government and Primary Health Tasmania invest in:

    1. a policy and a practice framework, developed and implemented by a designated lead state government agency
    2. a positive community education campaign
    3. regional Tasmanian collaboration and services which include:
      • multidisciplinary professional networks for local case management and support
      • specialist case management
      • specialist clinical, psychosocial, practical and peer supports for older people
      • specialist clinical, psychosocial, practical and peer supports for families and carers
      • a partnership response to critical incidents that leads to positive supports
      • services of last resort that can minimise client and environmental harm to levels within the risk tolerances of mainstream services
      • a workforce development plan
    4. a digital hoarding and CMHH information hub.
    5. testing the service design with older Tasmanians living with hoarding or CMHH.

    To do this, we estimate that the Tasmanian government needs to invest about $3.3m over 5 years from 2022-23 to 2025-26. As well, Primary Health Tasmania would need to invest about $4.5m over the same period.

    This investment would provide intensive supports for up to 90 people a year. It would also allow mainstream services to improve and expand their response to this group.

    This would be a significant saving for the government and give Tasmanians living with hoarding or CMHH access to effective supports that enable them to age well at home by 2025.

    Tasmanian State Budget Submission

     

Events and Networks

  • Future events

    Minimum_2

    1st to 24th April 2022, Top Gallery, Salamanca Arts Centre, Hobart Tasmania.

    Artist Siobhan Marriott, who has family members with hoarding behaviour, is having a solo exhibition at the Salamanca Arts Centre.

  • Past events

    Regional Workshops

    Anglicare Tasmania held Treasured Lives Workshops across Tasmania in February 2022 to bring together professionals interested in supporting Tasmanians living with hoarding or challenges maintaining a healthy home.

    These workshops aimed to:

    • build knowledge about hoarding behaviour, the challenges for clients and how to support them
    • build regional networks by bringing together professionals to encourage case management and partnership working
    • facilitate change by identifying regional needs that might help services work together to support families.
    Download Treasure Lives Workshop Presentation

     

    Hear talks from Lindsey and guest speakers Siobhan Marriott (artist and member of a family living with hoarding), Lesley King (Tasmania Fire Service) and Rick Fulton (Housing Tasmania).

     

    Webinar – Treasured Lives: Tasmanian Carers Supporting Hoarding

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

     

    Precious Excess: Compulsive acquisition

    11th February to 26th February 2022, Moonah Arts Centre, Tasmania

    This group show brought together five artists from across Australia, the USA and the UK, responding to themes of acquiring and discarding, as witnessed through the caring of family members with hoarding behaviours. While building on compassionate mental health and peer support connections, these works explore the consumerist influences of capitalism and trauma behind amassing material belongings.

    See the artists’ work via Instagram @precious.excess

    Read Lindsey’s introduction to the exhibition below:

    Precious Excess Introduction by Lindsey Fidler (PDF) Precious Excess Introduction by Lindsey Fidler (Word)
  • Regional Support Networks

    Do you work or live in Tasmania?

    Are you interested in joining a network to support Tasmanian families living with hoarding behaviours or challenges maintaining a healthy home?

    Please complete this Expression of Interest form to let us know. Or contact Lindsey Fidler: lindseyf@anglicare-tas.org.au

     

    Why join a regional support network?

    Local networks of professionals who encounter or work with people living with hoarding behaviours can:

    • enable local services to case manage clients and partner on providing holistic support for people, animals and property
    • turn crisis responses (such as hospitalisations, tenancy risks, neighbourhood complaints and animal welfare concerns) into positive support for people, animals and environmental risks
    • build knowledge and skill development within local services
    • reach more families and deliver more positive impacts.

Tools and links

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 these lists as a PDF or Word docx

    Treasured Lives resource list (PDF) Treasured Lives resource list (Word)