This article showcases excerpts from a guide on Community Care Inform Adults about working with adults who hoard, written by safeguarding trainer Deborah Barnett. The full guide covers types of hoarding, assessment tools and supporting someone to change. Subscribers can read the guide on Inform Adults.
What is hoarding?
Hoarding can be described as the collecting of, and inability to discard large quantities of goods, objects or information. Hoarding may involve neglecting aspects of the home and/or self, resulting in poor sanitary conditions and social isolation which eventually impact on the person’s physical or emotional wellbeing.
Hoarding is characterised by:
- An intense emotional attachment to objects that are not regarded as having the same value or worth to others.
- The person feeling a sense of loss were they to dispose of the object.
- The person perhaps seeing other value in the object such as environmental recycling use, or intrinsic value, for example, seeing the object as a thing of abstract beauty such as pebbles, stones, driftwood or artwork.
Issues of capacity
Working with a person who hoards is likely to raise issues of whether the person lacks mental capacity to make particular decisions. This may particularly be the case when the person is reluctant or refusing to accept help for their hoarding, and practitioners may question whether the person has the capacity to refuse.
The first three principles of the Mental Capacity Act 2005, set out in section 1 of the act, support people’s right to make decisions where they have the capacity to do so:
- A person must be assumed to have capacity unless it is established that he lacks capacity.
- A person is not to be treated as unable to make a decision unless all practicable steps to help him have been taken without success.
- A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
The third principle is perhaps particularly relevant to working with a person who hoards.
Section 2(3) of the act also makes clear that a person’s lack of capacity cannot be established simply by “an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity”.
However, the Mental Capacity Act code of practice states that one of the reasons why people may question a person’s capacity to make a specific decision is “the person’s behaviour or circumstances cause doubt as to whether they have capacity to make a decision” (4.35, MCA code of practice, p52). Arguably, extreme hoarding behaviour meets this criterion and an assessment of capacity should take place.
Under section 2 of the MCA, a person lacks capacity to make a decision if they are unable to make the decision at the material time because of an impairment or disturbance in the functioning of the mind or brain. As set out above, this is likely to apply to a person who hoards because it is often a symptom of a mental health condition or can be seen as a disorder in its own right.
Under section 3, a person is unable to make a decision if they are unable to:
- Understand the information relevant to the decision.
- Retain that information.
- Use or weigh that information as part of the process of making the decision.
- Communicate their decision, whether by talking, using sign language or other means.
Any capacity assessment carried out in relation to hoarding must be time specific, and relate to a specific intervention or action. This may include decisions about where a person should live, their tenancy agreement, care provision, healthcare or more generally accepting support for their hoarding.
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This piece does not really appreciate the real life complexities of hoarding behaviour. I would have liked to see some information in relation to executive capacity etc. There will be many whose capacity assessments will show that they have capacity however more may be needed as it is likely they may continue to put themselves at risk by failing to address hoarding behaviour. Failure to put statements and assurances into action. If in doubt involve an occupational therapist as part of joint approach, and ensure a referral is put through safeguarding route.
I agree with the sentiment, but I think the use of executive capacity is dangerous. MCA’s are used to disempower individuals a lot which I challenge regularly through my practice. If executive capacity is used in situations where there is perceived risk, individuals who do not conform to the workers views of what is appropriate, are at risk of losing their autonomy. In essence changing the worker needing to prove lack of capacity to the individual proving to the assessor. I disagree around safeguarding route, as any change will be implemented through building trusting relationships and going down a safeguarding route for this can make this more difficult. Again safeguarding in similar situations i.e. self neglect is generally done to lower anxiety for professionals, while not changing the outcome. Joint working with other professionals / agencies should be done as a norm and not only through procedures such as safeguarding.
I think there is a debate to be had about the straightforwardness of applying the law on capacity to hoarding behaviour, especially when looking at it from a self neglect perspective and thus from a safeguarding perspective – hoarding is part of self neglect and self neglect is part of safeguarding under the Care Act (2014). In my view, the transactional nature of information exchange between worker and SU that is the nature MCA may not be enough in all cases esp where the client is very astute in communicating their understanding of pros and cons etc but still being at significant risk due to inability to take action as a result of hoarding disorder. I would be very careful not to fail to take a procedural step based on my own opinion: Safeguarding is not done “to lower anxiety for professionals while not changing the outcome”, but rather for several other reasons including to ensure preventative measures are in place, obtain the views and wishes of a service user (in light of the safeguarding concern) and other relevant persons etc. I agree with views previously expressed here by another writer that “someone hoarding is not going to share intimate details of themselves straightaway […] unless further enquiries are made…we may be leaving someone vulnerable and making decisions that cannot be justified later.” https://www.communitycare.co.uk/2016/08/22/hoarding-self-neglect-social-workers-need-know/
Agree re safeguarding may not be an ideal route to maintain trust relationship however may be a way of focusing MDT resources to explore creative solutions. Executive capacity is in my view not helpful- not a legal requirement for capacity to make decision and should be seen as part of weighing. Too much emphasis on this will disempower as we risk expecting more of people with an impairment of mind than we do of others
Safeguarding is mentioned as a necessary procedure although I agree not all situations can best be addressed through this route. However we should be able to justify why such a route was not taken. I think there is an assumption that taking such a route may hinder relationship based work but this assumption rests on the premise that safeguarding is hindering in itself. I would differ on that and add that safeguarding can be empowering to service users and the enquiringly process can form a place for relationships based work on which trust may be developed. Executive capacity is not not found in law although a simple research will show it is not an uncommon term. People with learning disability for example, may, by virtue of having a learning disability, convey a good level of understanding, weighing up etc, but may be unable to execute certain actions because they don’t have or have never learned the required skills. In this kind of scenario, I would argue that a MCA should be informed by an OT assessment which would look at the part of executing action.
Theres no such thing as executive capacity. Weve made it up because we cannot live with the consequences of people making decisions that others, particularly worried family members, can live with. As a profession we seem quite sure that we want people not to have capacity so that we may do our thing to the person. I often wait in meetings to see how long it will take when a worried professional, unable to cope with the level of risk described, will use the executive capacity line. Its a con. Ive never once seen it used to enable people or to argue that the person HAS capacity.
Its fair enough, I would probably argue that excutive capacity is the reason why I want my family member not to hoard but its not real.
Perhaps we need to start with a bit of critical reflection within our own profession when it comes to our approach to risk and human rights?
Good joint working is paramount in hoarding cases. I have invited the social worker, fire service, community psychiatry nurse and the council to support the client. Following an environmental assessment I shared with him identified tripping and fire hazards. He informed me I was talking nonsense and was my blouse a fire risk? In hind sight I wish I had advised that his response was not proportionate, although a good point. I have communicated with tact and empathy with this gent and although he acknowledges he needs to clear but when it comes to the ‘sorting’, he can not allow this to happen – he sees items singularly and not as a whole collection. A good tool to use in these cases is positive risk assessments. We need to understand our clients view to hoarding, it is for whatever reasons that have led them to hoard; often following a traumatic event or instilling purpose and meaning to their lives. In my case, he requested help and advised that he can not live like it but was unable to part from these items (items not rubbish!) and therefore rather than finding evidence to suggest clients as not having capacity, we should focus on the priorities of assessment in keeping the client safe. What is important – is it to identify the client lacks capacity or is to make exit routes clear in the event of a fire and to enable access to facilities i.e. toilet and kitchen. As professionals we need to remain focussed; as to not judge or be risk adverse and cast aside our values and develop an understanding of the hoarder. Removing, moving items or throwing items away can have a catastrophic impact on their mental wellbeing whether it’s as simple as a milk carton. It’s difficult for us professionals to walk away feeling we haven’t done our job but we must remain client centred. we fear that it compromises our professional integrity but what is right for the client’s wellbeing and safety?
I totally agree Karen thus my comment around implementing safeguarding procedures in such circumstances. I recognise that self neglect is under the Care Act recognised as a safeguarding concern, however unless you are working with the service user as you have said then what outcome are you actually going to achieve through this process, keeping in mind safeguarding is outcome based. Unless the service user wants to achieve change then no change will occur.
As Karen eloquently argues, a multi-agency approach is really important when working with people who are ‘hoarders’. A safeguarding referral is often a very useful way of bringing agencies together to support the person and work to mitigate any risks.
I think it is important to remember that safeguarding needs to strike a balance between protection and empowerment. I would expect any safeguarding alert to include what does the client want to happen.
Its a non existent term that it is not explicitly mentioned in statute or the code of conduct and is at risk of abuse to strip away service users rights. Although I see the logic it is not compatible with language of decision specific as there is know action specific if this what they wish for Practiitioners to adhere it should be made explicit and pit falls and strengths of this approach should be discussed.
Multi agency approach is ideal – but sometimes the agencies won’t get involved so as previously a safeguarding approach focuses people’s attention. Especially when the person is asking for support and not getting any.
The crux of the matter is whether or not you consider hoarding to be a mental disorder. If you go along with the line that hoarding behaviours arises from uncontrollable compulsive and obsessive behaviours, you can then argue that a person does have impairment of the mind which then raising questions regarding their MC to choose to hoard in the first place.
I have seen the extreme end of the hoarding spectrum, having worked with people who have been evicted due to their hoarding and resorted to rough sleeping. These unfortunate SU have slipped through the net, usually by well meaning professionals who have deemed they have capacity to severely neglect their properties and deemed to have the capacity not to abide by their tenancy rules.
I completely agree with “Experienced SW” in that we do at least need to consider Executive Capacity and countless SARs can be evidenced to show the implications where this is not considered at all. This is not simply about being risk averse its seeking a balanced view and network to ensure that executing decisions can be rightfully supported; while we know that people who hoard are not a homogenous group with shared experiences and strengths, we do know that executing decisions for many people who hoard is a genuine area of difficulty for a whole host of reasons. This therefore is an area where we should be using multi agency approaches to support people skilfully using tools like Clutter Ratings to transparently discuss outcomes of not just making decisions but executing them. Done well this is liberating and strengths based not threatening and deficit based.