Hoarding is very topical, having recently been recognised as a mental health problem and included in the Diagnostic Statistical Manual of Mental Disorders (DSM-5) (APA, 2013). The British Psychological Society is about to publish good practice guidelines to advise and inform people working with people with hoarding difficulties. In addition, there has been plenty of media interest, some of which has contributed to educating and raising awareness but some can be described as irresponsible or indeed unethical.
Hoarding is now seen as a discreet and separate mental health difficulty and not a part of another condition, like obsessive compulsive disorder or depression, quite different to ‘collecting’, and certainly not a ‘lifestyle choice’. Hoarding disorder is characterised by: excessive acquisition of objects, persistent difficulty discarding or parting with possessions, excessive clutter that compromises the person’s living space and significant distress or functional impairment (APA, 2013; Steketee & Frost 2014a).
One of the difficulties for people who hoard is getting proper help, which appears to relate to the inclusion of the presence of ‘distress or functional impairment’. Until recently if a person visited their GP or was seen by mental health services the apparent lack of ‘distress’ could lead to them wrongly being sent away. For some people with hoarding difficulties the functional impairment will be extreme, but the absence of expressed distress can lead to discharge from services or not being able to access them in the first place.
In addition, people with hoarding difficulties are frequently referred to as “lacking insight” (Tolin et al, 2010) or being “slow to seek out help” (Mackin et al, 2011). Steketee & Frost (2014a) point out that a perceived lack of insight may actually reflect the person’s lack of confidence that any change is possible. The ‘lack of insight’ can be used to wrongly label a person who does not describe themselves as a ‘hoarder’.
Yet they may have an understanding that there is a difficulty. A person described as without ‘insight’ may more accurately reflect the state of (non) engagement with statutory services that have either wrongly labelled them, blamed them, minimised their problem or only become involved in highly stressful combative-type interventions such as forced clearance. The psychological, social and environmental effects of hoarding disorder can cause problems not only to the people themselves.
Difficulties can arise for family members, neighbours and the wider community. Hoarding can result in unsanitary living conditions, self-neglect, risk to self and others and potential fire hazards, in addition to depression, anxiety and poorer quality of life (Frost et al, 2000; Tolin et al, 2007; Mataix-Cols et al, 2010). If left untreated, hoarding disorder can result in high levels of distress and social functioning (Muroff, 2011), substantial work impairment (Tolin et al, 2008) and lead to a number of problems, including housing, social, familial, legal, financial, property damage and debt. Hoarding disorder also has a significant impact on families and social relationships.
Treatment for hoarding disorder
Prior to hoarding being properly recognised treatment consisted of cognitive behavioural therapy (CBT), as recommended for obsessive compulsive disorder. More recently, work has been done to adapt CBT for hoarding (Steketee & Frost, 2014a & b). Treatment includes motivational work, identifying thoughts about possessions, acquisition, disposal and agreeing on behavioural goals. Outcomes for individual treatment are quite mixed suggesting CBT needs to be modified for this group (Steketee et al, 2010).
A consistent difficulty reported in studies is a high dropout rate, and poorer engagement of men (Gilliam et al, 2011; Muroff et al, 2009). Group treatment for hoarding is at an even earlier stage of development, but Muroff et al (2009) evaluated two groups and showed an 8.6 mean reduction score on the Saving Inventory-Revised (Frost et al, 2004). Gilliam et al (2011) looked at outcomes for 30 people who attended a weekly CBT-based group. Results showed that 73% of those who completed treatment rated themselves as much or very much improved. Significant improvements were also found for symptoms of depression and anxiety, and improved psychosocial functioning.
However, the dropout was reported as a third of people.
There are a number of advantages for group treatment, including being with others with similar difficulties, providing opportunity to reduce the shame that may accompany the disorder, and increasing motivational change (Muroff et al, 2011). It also offers an opportunity for peer support and shared understanding into the emotional attachment to items. Although limited, research has shown promise for the development of self-help groups for people with hoarding disorder.
A structured approach to self-help groups has been developed in America, and is known as ‘Buried in treasures workshop’ (Frost et al, 2012; Frost et al, 2011). The groups run for 13 weeks, are facilitated by non-professionals and held in non-mental health settings. Resources and a book to guide facilitators are available, and early indications are this is as effective as CBT-based groups (Tolin et al, 2014) and, encouragingly, a dropout rate of just 10% is reported (Frost et al, 2012).
Development of a self-help group
It seems there is a persistent difficulty for people with hoarding disorder even receiving services; this is due to a lack of recognition that hoarding is a mental health problem, let alone services that understand hoarding disorder. Further difficulties can be experienced in engaging with those services, with high dropout or potentially inappropriate discharge. This points to the need to develop group interventions that are more aligned with the self-help style of work as this may be more effective at delivering appropriate support and care.
The first author had many years’ experience of supporting and facilitating other user-led groups, such as hearing voices groups and carers groups, while the second author is experienced in working with those people excluded from statutory services, and working in a charity that facilitated user involvement and engagement. Initial discussions followed and led to the founding of a Surrey-based self-help group.
The development benefited from the expertise of a mental health NHS partnership trust and local mental health charity the Mary Frances Trust, which provides a variety of services for people with mental health problems. It is run by people who use the service, and before deciding on the development, a proposal was taken to the Trust’s management board and comments sought from users of the service. It was agreed that the group would be open to people with hoarding difficulties (self-defined), but also their friends and relatives. It was also agreed to facilitate it in the evening and in the venue Mary Frances Trust works from.
A non-statutory mental health setting is frequently cited as key to engagement (Gillard et al, 2014). The next stage involved recruiting two volunteers to work as co-facilitators, one of whom had experience of caring for someone with hoarding difficulties. The volunteers were offered training in group skills that was developed and facilitated by the professional lead for occupational therapy from the mental health trust. It was agreed the group would be open access, with no referral required. Attendees were asked to stay for the duration of the session, but could attend once, or every month, as they wanted.
In the spirit of collaboration the group was established with a plan to decide on aims and objectives in the first session. Information is given to new people on arrival to help them understand how the group runs and feel welcomed. Attendees are invited to make contact with the Mary Frances Trust before attending but not required to do so. The open style of the group raised interesting dilemmas about managing risk and responsibility, demonstrating the difference in approach between statutory services (risk averse, holding responsibilities for care) and a non-statutory agency (the person holding responsibility for themselves, empowerment of people to take care of themselves and each other).
Evidence suggests that people with mental health needs value self-referral, which increases self-determination and empowerment, whereas it may be more challenging for staff from statutory services to fully embrace (Gillard et al, 2014). We continue to receive regular calls from staff asking how they can ‘refer’ someone to the group. Following initial advertising in the local press and radio, the response from potential attendees was so high that we decided to recruit a fifth facilitator from the NHS trust to support the group. We were grateful for the media interest but cautious about several requests from journalists wishing to attend.
We agreed to ask people who were ‘interested’ in hoarding not to attend, as we began to fear voyeuristic interest, rather than the genuine needs of people struggling with hoarding and their carers. We hoped that by working in partnership we would create a group that was accessible, yet supportive, and maximised the opportunities to successfully engage people with hoarding difficulties.
We were interested to know if attendees found the sessions helpful, and to get feedback so we could learn and change as we progressed. Each month participants were asked to complete an evaluation of the group. After running the group for a year we asked for more detailed feedback to assist with evaluation. Attendees were asked to self-rate the severity of their difficulties, emotional distress, stigma and social relationships. In addition, carers were asked for their evaluation; the results of which are not included here, but we plan to report separately.
For the first 12 months the group had been running, between 13 and 22 people attended each session, with an average of 19. Of these, self-identified friends/carers/supporters of someone who hoards made up 13% of attendees. The proportion of men attending was 55%. The majority (74%) of attendees were aged over 41 and none were under 18.
Most people described themselves as ‘white British’ (95%), with 2.6% being ‘white Irish’ – this compares with the population of Surrey being 83% ‘white British’. At the annual review the number of sessions attended ranged from one to 12, with an average of nine; the majority had come regularly for between nine and 12 months.
We asked the people with hoarding difficulties how severe they felt their problem was. Of 18 responses the duration of time they say hoarding has been a problem ranged from four to 50 years, with an average of 18 years. People were asked to rate on a nine-point scale, where nine is ‘extremely difficult’, how severe the problem was. On average, most people identified a significant problem in terms of impact on their life, excessive acquisition, difficulty discarding and high distress
We also asked people to rate how much change they have made to their hoarding difficulty since coming to the sessions. On a five-point Likert scale, only three (16.6%) out of 18 reported either ‘no change or it’s got worse’. This confirmed our impression that the vast majority were using the group to support them working on their difficulties.
Almost everyone reported they felt somewhat better or a lot better since coming (17 of 18 responses). Qualitative data gives an indication of how people have gone about making changes: “I am now organising post… I have thrown out magazines and am 60% towards filing important paperwork.” “Gave me good ideas where to start.” “Becoming progressively more helpful.”
Everyone reported they felt more supported since attending the group. We were interested in whether attendance had made a difference to how they were getting on more generally with others; 11 out of 17 (65%) said relationships with others were ‘somewhat’ or ‘moderately’ improved since attending the group. We also asked if attending the group had had an impact on the stigma associated with hoarding - comments made about what they appreciated included:
“Useful introduction to hoarding and helpful to hear the experiences of other success in managing hoarding issues.” “I feel like I belong somewhere.” “Positive feedback from people and encouragement.” “Very constructive.” “It was helpful to tell my own story.” “Always uplifting.” “Others seem to have the same problems as me.”
Monthly feedback also collected ideas for change, which was used to guide future sessions in order to be responsive and enable shared ownership of the group. The vast majority of negative feedback related to the frequency and duration of the sessions. Many want the group to run for longer than two hours, and/or meet more regularly.
The group has been successful in engaging people, and keeping them engaged. We regularly had new people join, and a large core group who attended most months. This was pleasing and we hope reflects the collaborative nature of the setting up and on-going facilitation. Results suggest that attendees are very satisfied with how it is running, but also making significant changes to their hoarding difficulties. In addition they feel more supported, less distressed and less stigma about hoarding.
The gender split reflects that seen in prevalence studies (Nordsletten et al, 2013) but is in marked contrast to that reported in research studies of treatment outcome. Gender bias is frequently reported in mental health. It has been well documented that there is a higher prevalence of many mental health problems among women, with women more likely to access mental health services (World Health Organization, 2014). The gender balance in the group is also in contrast to studies investigating gender differences among helpseeking behaviour (Cottone et al, 2002; Plaisier et al, 2008; Mclean & Hope, 2010).
It would seem this group has been able to attract and engage men with hoarding difficulties, whereas mental health service provision has been less successful. The older age of the participants is perhaps less surprising given that difficulties with hoarding will, by nature of the time taken to accumulate possessions, disproportionally affect older adults (Eckfield & Wallhagen, 2013).
The smaller than perhaps expected numbers of people from ethnically diverse backgrounds is of concern and needs to be considered in future developments for this group and others considering setting up similar services. Including carers has raised further issues about whether it is possible for one group to address the needs of both parties. Although at times we separated the large group and offered a small sub-group at the same time for carers, this was not particularly well received and feedback led to us including carers and people with hoarding difficulties in the same small groups. The numbers of carers attending is small, and we have wondered if it feels a safe and welcoming place for them. Anecdotally, we think carers seem more likely to attend once or twice, rather than stay involved. We do not have information from those that don’t engage about their experiences; this would be useful to explore in a larger research project.
Following this evaluation and a review within one of the sessions with group members some changes have already been implemented. This includes providing an information sheet about the group, particularly for newcomers; organising a ‘buddy’ system so people can support each other with changes outside of the group; and involving attendees more actively in the running of the sessions. This last objective has included someone being identified as a ‘meeter and greeter’ to welcome people as they arrive. The group continues to run monthly but with less involvement by the paid facilitators and increasing involvement of the volunteer facilitators and group members. We hope with time to take further steps away from the group to encourage greater self-reliance for group members.
ABOUT THE AUTHORS
• Sophie Holmes is lead consultant clinical psychologist at Sussex Partnership NHS Trust, but at the time of this work she worked for Surrey and Borders Partnership NHS Trust.
• Patrick Wolter is chief executive of the Mary Frances Trust.
• Clodagh Harris is an assistant psychologist working across two community mental health teams at Surrey and Borders Partnership NHS Trust.
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