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 Social Sciences 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: ss.ethics@utas.edu.au | Phone: (03) 6226 2975.

    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?

    Events

    Treasured Lives Webinar – Tuesday 25th of May 2020 10:00am to 12:00pm

    Facilitated by TasCOSS CEO Adrienne Picone, this webinar will explore 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.

    This webinar offers participants the first opportunity to hear the lead Researcher, Lindsey Fidler, share insights from Treasured Lives. It will also offer 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 Tasmania CEO, Maxine Griffiths and Carers Tasmania‘s Executive Policy Officer, Dr Christine Materia. Webinar participants will be invited to share their experiences and reflections on what Tasmania needs to support families, carers and our older residents living with hoarding.

    Through the webinar, participants will:

    • Explore the nature of hoarding and challenges maintaining a healthy home
    • Develop an understanding of the experiences of families and carers supporting those living with hoarding and/or challenges maintaining a healthy home.
    • Share reflections on their own experiences of hoarding and/or CMHH, through lived experience or as service providers and the impacts as you see them.
    • Consider what’s needed in Tasmania to support those living with hoarding, their families and carers and those who work to support them.

    The webinar will also share information on how to access resources on hoarding and how to participate in the next phase of Treasured Lives.

    Register here

     

    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.

    Please note your informed consent is required to participate in these interviews.

  • Our reports

    Phase One Report

    Full report Summary report

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.

    Please note your informed consent is required to participate in these interviews.

  • 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.

Resources

This is a selected list of resources that may be useful for families and carers of those living with hoarding and/or maintaining a healthy home.

  • Books

    Title Author Target group Description
    Buried in Treasures David Tolin, Randy Frost and Gail Steketee People who have a problem with hoarding, with asides for families and friends and professionals Self-help treatment program
    Digging Out: Helping your loved one manage clutter, hoarding and compulsive acquiring Michael Tompkins and Tamara Hartl Families and friends of people who have a problem with hoarding Practical advice focusing on harm reduction and salvaging relationships
    Children of Hoarders: How to minimize conflict, reduce the clutter, and improve your relationship Fugen Neziroglu and Katharine Donnelly Adult children of people who have a problem with hoarding Aimed at helping CoH manage their own emotions. Uses Cognitive Behavioural Therapy, mindfulness etc.
    Stuff: Compulsive hoarding and the meaning of things Randy Frost and Gail Steketee General audience Case studies and exploration of the psychology of hoarding
    Dirty Secret: A daughter comes clean about her mother’s compulsive hoarding Jessie Scholl General audience Memoir of the daughter of a hoarder
    Coming Clean Kimberley Rae Miller General audience Memoir of the daughter of a hoarder
    White Walls: A memoir about motherhood, daughterhood and the mess in between Judy Batalion General audience Memoir of the daughter of a hoarder
  • Websites

    Name Target group Description
    Children of Hoarders Children of hoarders Biggest and best known online support for family members of hoarders. Resources, information and support.
    r/hoarding ‘For those affected by hoarders, hoarders themselves or people interested in it’ Public discussion forum offering advice and support. People post questions, share their feelings and experiences, and personal progress. Has a wiki with comprehensive info and resources.
    International OCD Foundation For people affected by hoarding, including families, mental health professionals and community responders Website with information and resource directory.
    Maroondah Hoarding and Squalor Network General community, including hoarders and their families, and the community sector Excellent introductory articles. Comprehensive resource guide for Maroondah locals and others
    Pathways through the maze Hoarders, families, and service providers Basic information, resources and training
    Hoarding Home Solutions Hoarding clients, their families and professional service providers Good resources page, blog and free newsletter
  • Multimedia

    Name Author Medium Description
    Hoarding Disorder playlist International OCD Foundation YouTube A playlist of short (2-3 minute) videos explaining hoarding disorder and giving tips for family members.
    Clutter Chronicles Lori Koppelman Podcast Described as, ‘An ongoing conversation with Mary, who calls herself a recovering hoarder. She is willing to share her up-til-now very private life in an effort to be helpful to others, may they be packrats, someone who loves a hoarder or those who just want to understand something that’s mystifying to them.’
    The Hoarding Solution Podcast Tammi Moses Podcast Described as, ‘Join us on a DEEP Dive into Hoarding Issues & HOW we as a community can approach this issue with compassion, kindness & awareness!’
    Helping hoarders let go ABC Radio Archived radio broadcast An interview with Jessica Grisham, a clinical and research psychologist at the University of New South Wales.
    The psychology of hoarding ABC Radio Archived radio broadcast Interviews with Professor Randy Frost (co-author of Buried in Treasures), a support worker, and two people who have hoarding behaviours.
  • Training

    Name Cost Run by Target group Description
    Hoarding Home Solutions Family & Friends Fee to be paid Hoarding Home Solutions ‘anyone concerned about a loved one’s hoarding’ Online. Workbooks, video lessons, real life stories and resources and tools. 12 x 1-hour sessions (recommended).
    Understanding and treating hoarding disorder Fee to be paid University of Sydney Open to everyone, but mainly targeted at professionals Online; one 8-hour session. Covers aetiology, assessment and therapy (Cognitive Behavioural Therapy).
    Virtual Hoarding Awareness Training Fee to be paid Hoarding Disorders UK Practitioners and staff, family and friends Online. 4.5 hours over one day. Covers understanding hoarding, how to help and further knowledge. An advanced course is also available.
    Helping People who Hoard: Alternatives to nagging, pleading, and threatening Free Michael Tompkins via IOCDF Family members 44-minute Youtube video. Covers dealing with people who refuse help and repairing damaged relationships.
    Family as Motivators Free via GP referral Lifeline Victoria Family members and carers 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.’
    Hoarding and squalor training in effective service responses Not given Catholic Community Services Service providers, relatives and anyone with an interest Full day workshop. Unclear whether online or in person. Half day introductory workshop also available.
    Understanding animal hoarding Fee to be paid Animal Courses Direct Staff working in animal rescue and social services Online. Study time 10 hours.
    How to help someone who hoards Free Hoarding Home Solutions Anyone dealing with a hoarding situation Online. 40 minute video.
  • Peer support

    Name Platform Run by Aimed at Description
    Adult Children of Hoarders Facebook Children of Hoarders Adult children of hoarders ‘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 Facebook Children of Hoarders Family and friends of hoarders ‘A safe place to be able to let out the frustration of living with a hoarder.’
    MYCOHP Groups.io Children of Hoarders Minor children of hoarding parents ‘A safe, understanding, peer support group for minors and youth living in hoards.’
    Children of Hoarders Groups.io Children of Hoarders Adult children of hoarders ‘Join us for support, information sharing, and understanding… a community of people who grew up the same way or have similar adult experiences and can relate’
    r/hoarding Reddit Volunteer moderators ‘For those affected by hoarders, hoarders themselves or people interested in it’ Public discussion forum offering advice and support. People post questions, rants/venting, and personal progress.
    r/ChildofHoarder Reddit Volunteer moderators ‘for the children, friends, loved ones of hoarders’ Public discussion forum offering advice and support. People share stories, ask questions and vent their frustration.
    Hoarding/Cluttering Support Group Facebook Unknown ‘a support group for Hoarders and those with Clutter problems – and for those impacted by Hoarding’ ‘What we’re trying to do in this group is to provide tools, education and information – in addition to support for everyone impacted by Hoarding – and that includes loved ones, social workers, therapists, organizers, and clean-up crews. …not on any formal basis – but as a grass-roots effort. We’re learning from each other.’
    Hoarding and clutter anxiety support group Zoom ARCVic Unknown whether this is for families or for hoarders themselves Peer online support group facilitated by ARCVic volunteers.
    Arafmi Carer Support Group Zoom Arafmi ‘parents, partners, relatives and friends caring for/about a loved one with mental illness’ ‘a supportive environment where people have the opportunity to talk about their feelings, help explore alternative ways of coping, offer support to other group members, or to simply listen and observe’
    Safe Spaces Face-to-face & Zoom Mental Health Families and Friends Tasmania ‘families and friends who support a person with mental ill health’ ‘an opportunity to share experiences with others who understand the ups and downs’