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Practical Insights for Busy Caregivers

How to respond to hoarding behaviour

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May 6, 2019, by Paul Cavanagh, Caregiver Exchange

Having someone in your family who hoards personal possessions can be distressing. You may lose sleep over the risks to their safety. And you may get frustrated if they’re resisting help because they don’t see anything wrong with what they’re doing.

“It can be a very challenging behaviour for families to respond to,” says Alda Melo, an occupational therapist with VHA Home HealthCare who works as a mental health consultant with the Toronto Hoarding Support Services Network. “But while it is challenging, helping is possible.”

What is hoarding?

People who hoard have persistent difficulty letting go of everyday items, some of which seem to have no value to the outside observer. Clutter accumulates in the home to the point where it poses safety risks and may interfere with the person’s ability to carry out every day activities. The sheer volume of items may create a fire risk or may put the person at risk of falling. 

Because so much of the person’s living space is cluttered, they may not be sleeping in their bed, or have access to their bathtub, or have room to accommodate friends who want to drop in for a visit. Despite this, they may continue to bring items into their home that they don’t need even though there’s no space available.

The urge to hold on to items can be very strong. Discarding things can lead to distress. People who hoard consider all their possessions unique, valuable, and something they may need.

According to Alda, individuals experience different degrees of difficulty with letting go. All hoarders have trouble letting go of their items. However, some folks can recognize that they don’t, for instance, need newspapers from 1980 that they still haven’t read, while others can’t. Those who can’t may have exaggerated beliefs about the loss of information.

Hoarding behaviours are chronic, and they tend to progress with age. “This is an illness,” Alda says. “This is not a choice. And there is no quick fix for this problem.”

A focus on harm reduction

Because there’s no cure for hoarding disorder at this time and most people don’t perceive that their hoarding beliefs and behaviours are a problem, there’s little point trying to change the person’s behaviour. Instead, it’s much more effective to help them reduce the risk associated with the behaviour. That may be a risk to their safety. Or it may be the risk of losing their home if they’ve received a warning letter or an eviction notice from their landlord.

While many people who hoard may lack insight into their behaviour and may not see it as a problem, they usually recognize something like a warning or eviction letter as a problem. This can make them receptive to receiving help, but only if it’s offered the right way.

When the Toronto Hoarding Support Services Network gets involved, they work to help the person let go of just enough items to remain in their home with greater safety and comfort. “We don’t have a hidden agenda of getting them to declutter their whole house,” says Alda. “And they do fear that.”

A team is built around the person that may include family members, legal aid (or someone else to address legal issues related to tenant rights and the risk of eviction), a housing worker (if they live in subsidized or supportive housing), their case manager (if they have one), a coach from the network who can provide hands-on support, and anybody else who’s part of the person’s support system who can help address the risk. 

If the person has received a warning letter or eviction notice, one of the first steps is to make sure the person understands the reasons for the letter or notice. (Sometimes the specifics/expectations aren’t all that clear from the letter, says Alda.) A meeting is arranged with the landlord to clarify what will make the risk of eviction go away. 

The team will then work out a process for meeting the landlord’s expectations that specifies who will do what and by when. For instance, if the landlord’s concern is that the person is in violation of the fire code because there aren’t clear pathways that are three feet wide from the entrance of the home to every room and within each room, the team will work with the person to help them sort and discard enough items to clear those pathways.

“This kind of work moves very slowly,” Alda says. “It’s difficult for clients to let go, for clients to make decisions about what to do with an item.” The team may have to go back to the landlord to negotiate a deadline extension. And so long as progress is being made, an extension can generally be negotiated.

Advice to families

  • Recognize that you can’t stop your relative from hoarding. Understand what you have control over and what you don’t. You can’t assume responsibility for your relative’s behaviours or choices. Respect their right to choose.
  • Focus on the risk at hand (e.g. falls, fire risk). Share your concerns with your relative.
  • To the best of your ability, avoid arguing or debating. Don’t assign blame. Keep lines of communication open.
  • Work with your relative, not around them. Ask them what their perception of the problem is and what they may see as potential solutions.
  • Let your relative know you want them to have some help to address safety risks, not to declutter everything. 
  • Seek assistance.
  • Look after yourself. Don’t forget to balance your own needs with the needs of the person you’re supporting.

About accessing the Toronto Hoarding Support Services Network

  • Anybody can make a referral to the network (don’t need a physician’s referral). 
  • It’s for clients living with low to moderate income in the Toronto area.
  • Call the intake line 416-482-4622 at VHA for the coordinated support services
  • Following intake, an in-home assessment is booked
  • The client has to consent to the assessment and service
  • Based on the risk identified during the in-home assessment, a plan is developed with the client
  • This is a short-term service (4-6 months)

More about the Network

  • See the Network listing on torontocentralhealthline.ca
  • See family caregiver resources on the network website
  • See a list of the 16 partner organizations that joined forces with VHA Home HealthCare to launch the Network 
  • The Network is funded by the City of Toronto (Shelter, Support and Housing Administration)
  • The Network website is funded by the City of Toronto Social Development, Finance, and Administration

For hoarding support elsewhere in Ontario

  • Visit thehealthline.ca, choose an area of the province, and type “hoarding” into the search box