5.6 Self-Neglect and Hoarding

1. What is Self-Neglect and Hoarding?

1.1 Self-neglect

Self-neglect is an extreme lack of self-care which threatens an adult’s personal health, safety and wellbeing.

It covers a number of different behaviours which impact on the adult’s ability to:

• keep their home environment clean and tidy;
• care for their personal hygiene / self-care;
• seek help, access services, or work with practitioners to receive treatment for health conditions including treating illness or injuries or for social care needs;
• pay their bills or manage their personal affairs;
• keep in touch with family or friends;
• eat and / or drink properly;
• avoid harm.

Self-neglect is often an issue for older people. It does, however, also affect younger people. Younger people may be more likely to stay in contact with family or friends and with care and support service. However, contact with family and friends may be problematic, and they may feel that they have been failed by services and practitioners.

1.2 Causes of self-neglect

It is not always possible to establish the reason for self-neglecting behaviours, but they can be the result of:

• a brain injury, dementia or other mental disorder;
• obsessive compulsive disorder (OCD) or hoarding disorder;
• a physical illness which has an effect on the adult’s energy levels, attention span, organisational skills or motivation;
• reduced motivation as a side effect of medication;
• drug and / or alcohol misuse;
• a traumatic life change.

1.3 Signs of self-neglect

Signs of self-neglect include:

• very poor personal care;
• unkempt appearance;
• lack of essential food, clothing or shelter;
• malnutrition/ dehydration;
• living in squalid or unsanitary conditions;
• neglecting household maintenance;
• hoarding;
• keeping a large number of animals in inappropriate conditions;
• non-compliance with health or care services;
• inability or unwillingness to take medication.

1.4 Hoarding

Hoarding can be an illness in its own right, known as ‘hoarding disorder’ (Royal College of Psychiatrists). As with self-neglect, sometimes hoarding can be a symptom of physical or mental illness.

Hoarding disorder is not a lifestyle choice; it is different from a person who collects items and from an adult whose property is generally messy or cluttered. The difference between a hoarder and a collector is that hoarders have strong emotional attachments to their objects over and above their financial value.  Across the UK.  2.5 % – 6 % of homes are affected by hoarding.

Anything can be hoarded in any part of adult’s environment, but the most commonly hoarded items are:

• food and food containers;
• newspapers, magazines or books;
• containers such as plastic bags or cardboard boxes;
• clothes;
• letter, receipts or bills;
• animals;
• collectibles items such as DVDs, CDs toys and videos;
• items that others may consider rubbish;
• medical equipment;
• data (including emails which the adult does not want to delete).

Reasons for hoarding are similar to self-neglect and include that the adult:

• is physically or mentally unwell;
• has a cognitive impairment;
• is not being able to meet their own needs;
• is suffering trauma or loss;
• does not having adequate support around them;
• misuses drugs and / or alcohol ;
• has compulsive behaviours;
• has attachment disorders;
• is isolated.

See also Clutter Image Ratings – Hoarding Disorders UK; for a practical tool which practitioners can use to assess levels of clutter in the adult’s home.

2. Issues to Consider when an Adult is Self-Neglecting and / or Hoarding

2.1 How to respond appropriately

Self-neglect differs from other forms of abuse because it does not involve a perpetrator. Chapter 14 of the Care and Support Statutory Guidance includes self-neglect as a category of abuse and neglect:

‘Self-neglect: .. covers a wide range of behaviour neglecting to care for one’s personal hygiene, health or surroundings and includes behaviour such as hoarding. It should be noted that self-neglect may not prompt a section 42 enquiry’ (14.17).

Self-neglect should always be considered on an individual basis, depending on the adult’s specific circumstances. A Section 42 safeguarding enquiry may not always be the most appropriate response, but practitioners should work together to support the adult (also see Section 3, Safeguarding Thresholds).

If the self-neglect or hoarding means there is a risk of serious harm, the local authority must carry out a safeguarding enquiry.

2.2 Strengths-based approach

Working with adults who self-neglect / hoard can be challenging. They may refuse support or cannot see that there is a problem. Family, friends and neighbours can put pressure on practitioners to intervene, but quite often there is little that they can do if the adult does not cooperate. Such situations need to be managed sensitively. The starting point for practitioners working with adults who are at risk of, or are experiencing, self-neglect should focus on their strengths and building relationships with them (see Strengths-based Approaches, SCIE).

2.3 Non engagement with services

Adults who neglect themselves often decline help from others; in many cases they do not feel that they need it. Family or neighbours can sometimes be critical of professionals because they do not do anything to improve the adult’s situation. However, there are limitations to what others can do if the adult has mental capacity to make their own decisions about how they live. Sometimes, even when all agencies have done everything in their power to support an adult l, they die or suffer significant harm as a result of their own action or inaction. It is therefore vital that all efforts to engage with and support an individual are clearly recorded.

2.4 Mental capacity

The issue of mental capacity should always be considered when an adult is self-neglecting / hoarding (see Section 5.1, Assessing mental capacity).

For those who have mental capacity, the issue of personal choice is a key consideration. The Mental Capacity Act 2005 (MCA) is clear that it must be assumed that a person has mental capacity unless there is evidence to the contrary; an adult can make a decision that may seem to others to be bad or unwise if they have the mental capacity to do so. See also Section 4, Legal Framework for Responding to Self-Neglect and Hoarding.

Whether the adult is unable or unwilling to care for themselves should be the main basis for discussions between practitioners and the adult and any family or friends who are involved

3. Safeguarding Thresholds

The Care and Support Statutory Guidance states:

‘A decision on whether a response is required under safeguarding will depend on the adult’s ability to protect themselves by controlling their own behaviour. There may come a point when they are no longer able to do this, without external support.’

Any practitioner who has concerns about an adult who is self-neglecting and / or hoarding, should discuss this with their line manager / designated adult safeguarding lead. A referral to the adult safeguarding team should be made if it is considered appropriate.

Safeguarding duties will apply where the adult has care and support needs (many people who self-neglect do not), and they are at risk of self-neglect and they are unable to protect themselves because of their care and support needs. In most cases, the intervention should seek to minimise the risk while respecting the individual’s choices. It is rare that a total transformation will take place and positive change should be seen as a long-term, incremental process. (Self-Neglect at a Glance, SCIE)

Follow receipt of a safeguarding referral, the local authority will decide the action required, including which agency is best to lead the investigation. Other key services involved may include:

• housing;
• substance misuse;
• mental health;
• occupational therapy;
• environmental health;
• the fire and rescue.

If a safeguarding enquiry is undertaken, the adult who is at risk of or is experiencing abuse or neglect, their family / friends or independent advocate as relevant, and the practitioners involved should work together to decide what action, if any, is necessary and by whom to protect the adult. The local authority has a duty to ensure that appropriate action is taken. In some cases, safeguarding enquiries may result in the provision of care and support.

4. Legal Framework for Responding to Self-Neglect and Hoarding

Cases of actual or suspected self-neglect often present as complex situations in which the adult’s choices have to be balanced against the need to protect them and other people, such as neighbours. Practitioners should show professional curiosity, and focus on preventing, reducing or delaying the person’s care and support needs (see Preventing, Reducing or Delaying Needs and Professional Curiosity chapters).

It is  essential that the adult’s mental capacity is assessed before considering any legal interventions (see Section 5, Mental Capacity).

If a mental capacity assessment shows that the adult has mental capacity, but agreement cannot be reached with them about changing the circumstances in which they live, legal interventions may be needed. There are a number of ways in which legislation t can be used in such situations, including:

• Under Section 17 of the Police and Criminal Evidence Act 1984 (PACE), the police can forcibly gain access (if there is a risk to life or limb and / or to prevent a breach of the peace);
• an Approved Mental Health Professional (AMHP) can apply to a Magistrates Court for warrant to remove a person to a place of safety or up to 72 hours if they have been assessed as suffering from a mental disorder;
• environmental health enforcing clearing of insanitary conditions (Housing Act 2004, Environmental Protection Act, 1990 Section 80 and Building Act 1984, Section 76);
• the appointment of a guardian under the Mental Health Act (this can be used as a way of making the adult live at a specific address and report to health and social care practitioners. There is a power to recall the adult if they abscond);
• Animal Welfare Act 2006 if there are animals / pets in the property;
• a High Court order can be requested for adults with mental capacity who are experiencing self-neglect, to place them somewhere else – in their best interests –  if the risks are very high. (However, this is rarely used in practice as the courts consider it to be interference by the state).

In addition, the following legislation can also be used when people are hoarding:

• Public Health Act 1936, Sections 79, 83 and 84;
• Prevention of Damage by Pests Act 1949, Section 4;
• Environmental Protection Act 1990, Sections 79 and 80;
• The Building Act 1984, Section 76;
• Anti-Social Behaviour, Crime & Policing Act 2014;
• The Housing Act 2004.

5. Mental Capacity

5.1 Assessing mental capacity

When assessing mental capacity for an adult who is self-neglecting / hoarding, it is important that both their decision making, and executive functioning are considered. These two areas are key in cases of self-neglect and hoarding.

Aspects relating to decision making include:

• does the adult recognise they need help?
• Do they consent to participating in interventions that practitioners have assessed as being needed?
• can they take part in care and support planning?

Executive functioning (the ability to implement decisions that have been taken) aspects include:

• can the adult initiate and complete cleaning and decluttering with or without assistance and understand why this is necessary?
• can the adult seek and accept support from their family, community or professional resources?
• can the adult maintain progress and sustain changes made over a period of time with support?

When considering executive functioning, practitioners also need to take into consideration if what the adult is saying is accurate. If the adult says that they take care of themselves and complete their personal care, launder their clothing, eat well but they appear dishevelled and underweight, practitioners can use this as evidence to support their conclusions.

Sometimes adults who are self-neglecting or hoarding, do receive support due to it being assumed they have mental capacity; therefore, it is important a holistic approach is taken when assessing mental capacity.

Whether an adult who is self-neglecting has mental capacity will be a key consideration in the discussion as to whether a safeguarding referral should be made. If the adult does have the mental capacity, but they are at high risk of or are suffering due to self-neglect or hoarding, complex case management / social care involvement may be needed. In cases with significant risk that it may be necessary to refer the adult to a Risk Enablement Panel..

Key considerations when assessing mental capacity of an adult who is self-neglecting or hoarding include:

• do they understand their personal care needs, how to undertake them and the risk of not doing so;
• the condition of the home environment, the risks of not keeping it clean and maintained / free from hazards / how would the adult fix a problem if something breaks for example;
• independent living skills such as shopping for food, preparing meals, doing laundry and maintaining their home environment. How does the adult complete these tasks, do they understand the risks of not completing these tasks;
• their medical care / self-care – does the adult know their health needs, how do they manage this, any medication that they need to take, risks of not taking medication or not attending health appointments.

Where the adult is assessed as lacking mental capacity, interventions that are applied must be the least restrictive as possible, in accordance with Principle 5 in the MCA (see Mental Capacity chapter). However, family, friends professionals and the wider community should not be exposed to unacceptable risks. To ensure that action taken preserves the adult’s independence but also protects them from harm, all aspects of their situation and circumstances must be taken into account. An independent advocate should be involved if the adult is eligible (see Section 5.2, Independent advocacy).

In addition to best interests assessment, screening for dementia, depression and cognitive impairment should be central to any other assessment that is undertaken with the adult to explore if there may be any physical or psychological reasons why the adult is self-neglecting or hoarding.

A local authority can apply to the Court of Protection for an order to enter the premises and potentially remove an adult who does not have mental capacity and who is experiencing self-neglect / hoarding, if it is in their best interests. This is a common approach for local authorities as a way of safeguarding an adult who is self-neglecting / hoarding and who lacks the mental capacity to decide on their place of care and residence. They are often placed in a registered care or nursing home where they may be the subject to Deprivation of Liberty Safeguards (see Deprivation of Liberty Safeguards chapter). The Court of Protection’s decision will be based on whether the adult has mental capacity and what is in their best interests.

5.2 Independent advocacy

See Independent Advocacy chapter

As part of any Section 42 safeguarding enquiry, a referral must be made for an independent advocate if the adult is assessed as having substantial difficulty in understanding the process of the enquiry and there is no one else willing or able to support them.  If a mental capacity assessment concludes the adult does not have mental capacity, the independent advocate should continue to work with them.

6. Working with the Adult

Any supportive interventions, agreed with the adult as part of their assessment, should enable them to continue to make their own choices. Actions should be proportionate, focus on promoting their independence, empowering them, and promoting their wellbeing and safety rather than the forced removal or disposing of their possessions.

Self-neglect is complex, and practitioners s about seek to understand the adult’s unique circumstances and their perception of the situation as part of any intervention. There are many grey areas in cases of self-neglect and / or hoarding, and careful assessment is needed in order to avoid uncertainty or value judgements.

For people who have been assessed to have mental capacity to make decisions, but who are at risk of or are suffering self-neglect, complex social work case management may be needed as an intervention in its own right. Due to the sensitive nature of the situation, it will often take time to build a relationship of trust with the adult, and the practitioner will need to be creative in providing support. It is essential to work with the adult holistically, and adopt a non-judgemental, empathic and reliable approach, seeking their consent at all times. The foundations of the relationship should be working together, and the adult should be central to decision-making processes and supported and encouraged to sort and organise their belongings.

It is crucial that time is taken to build and establish a trusting relationship. Working with the adult using small, manageable steps towards decluttering, cleaning and organising may ensure there are sustained changes. Setting realistic goals and celebrating achievements along the way will help them to maintain motivation.

The adult should be central to any assessed process and care and support, and both consent and mental capacity should be checked on a regular basis.

6.1 Initial steps

There are a number of initial steps that practitioners should take with adults who have mental capacity, and also as part of a mental capacity assessment for those who capacity is not clear. These include:

• talk to the adult about the concerns, using a person-centred approach and obtain their views about what they want to happen in relation to their current situation;
• find out if there are any issues in the adult’s life that are contributing to their self-neglect and / or hoarding – remember it may take time for someone to be able to disclose related issues;
• conduct a risk assessment. This should cover:
  • does the adult acknowledge there is a problem?
  • do they accept that concerns expressed by family, friends, neighbours or other practitioners are valid?
  • do they understand the risk they may pose to themselves or others?
• seek to understand the adult’s decision-making abilities regarding the issues of their self-neglect;
• check as to whether the adult may be under negative influence, pressure or exploitation from a family member, neighbour or friend for example;
• exploring if there any obvious signs that the adult is not well;

Consensus, negotiation, building a positive relationship and persuasion are important interventions in supporting adults at risk of or suffering from self-neglect and / or hoarding. Their acceptance of help may be dependent on how this is offered and can take time. Taking a person-centred approach includes a practitioner listening to the adult’s own view of their situation and seeking informed consent from them where possible, before any other intervention.

As an adult who self-neglects / hoards can be resistant to support from others, practitioners should recognise that small initial interventions are important and should not be overlooked or undervalued. Simple support in the form of shopping, cooking or companionship may produce improvements and create an environment for the development of more extensive support. Building good relationships and maintaining contact can help interventions be accepted and situations can be monitored.

6.2 Care and support plan

A care and support plan should be developed, with a multi-disciplinary approach (see Care and Support Planning chapter). The adult should be involved, as far as possible, with their wellbeing as a central focus. If this is not successful, a safeguarding referral may be required.

7. Risk Assessment and Management

Risk assessment is key to managing cases of self-neglect and hoarding and can be assisted by suitable tools. However, these may not always be able to cover all situations, so care should be taken to use these in addition to risk assessment and not as a replacement.

Assessment tools may be useful, when used alongside interviewing skills that allow the practitioner to draw out the adult’s views and ways of coping and assess how far they would be willing to change and how this might take place. Such assessments should have focus on future change, as well as current risk.

Some people may wish to move into long term care, as they recognise that their living conditions are not suitable for them. For others, consideration should be given to other options such as a home care package, the use of day support or sheltered housing. Care and support plans should address any risk/s of self-neglect / hoarding and incorporate actions to be taken should the adult again start to self-neglect / hoard.

Working with adults who self-neglect / hoard should be outcome focused and interventions reviewed with them on a regular basis. Professional curiosity, imagination and creativity, an ability to appropriately challenge current coping mechanisms, record findings and thinking processes are important skills in risk assessment (see Professional Curiosity chapter).

8. Recording

See Case Recording chapter

Recording in complex cases is an important part of managing the risk for the adult, and for others who are affected by their self-neglect / hoarding. It is also important that practitioners can demonstrate proper processes have been followed and that any action taken has been reasonable and proportionate.

Recording should include:

• the adult’s history including social, emotional, mental and physical health;
• current presenting issues with observed evidence, using the adult’s own words where possible;
• a risk assessment of the current situation based on evidence and observation. This should include actual risk and potential risk, using risk assessment tools as appropriate;
• multi-disciplinary assessments should be requested and included in the overall risk assessment;
• a summary of risk and professional analysis and thinking;
• the risk management / safety plan to address areas of risk identified, including multi-agency agreements of interventions and deadlines. This should include clear identification of planned actions and interventions even if it was not possible to implement these. It is common in cases of self-neglect / hoarding for the adult to refuse all interventions and support, meaning the level of risk cannot then be reduced. It is essential that records show how risks have been evaluated and weighed against issues of the adult’s autonomy and their protection as well as what interventions have been offered to them and any reasons they have given for refusal.

Although this is a complex area of work, clear recording and information sharing supports defensible decision making. It also captures the decision-making process and demonstrates how interventions were planned, why, with what purpose and by whom.

9. Information Sharing

Sharing information, as appropriate, with managers, colleagues and multi-agency partners, is crucial to ensure that a full picture of the situation is available and that there is a consistent named practitioner who has oversight of the different agencies working with the adult and is able to coordinate the response.

As issues of professional trust are often key for adults who self-neglect / hoard, it is vital that where practitioners share information with others, they seek consent from the adult wherever possible. If the adult refuses consent to share their information it can still lawfully be shared if it is in the public interest to do so.

See also Information Sharing and Confidentiality chapter

10. Safeguarding Children and Young People

Children can often be affected if they live with a parent or carer who self-neglects / hoards, as the conditions within their home environment can have a negative impact on them. This can lead to resentment, helplessness and social isolation, and impact on their current and future development, their safety and their wellbeing.

If a parent or carer’s self-neglect or hoarding means a child or young person is suffering or likely to suffer significant harm, a referral to children’s social care should be made.  If the concerns are less serious, the local authority early help service can be contacted with the consent of the parent or carer (see Central Bedfordshire Safeguarding Children Procedures).

If the child or young person is a young carer, then a referral for a young carer’s assessment should be made.

11. Fire Safety

When a neglected or hoarded property is identified, the adult should be given information about how this causes an increased fire risk. A means of escape should be discussed with the adult and anyone else living in the home environment and recorded.

The information about the property must be shared with the fire service, so a fire safety check can be completed, and professional advice given. If the property is subsequently cleared, the local fire service should be notified.

12. Animals

Any evidence of collecting or hoarding of animals must be reported to the local RSPCA. Even if animals are not being hoarded, if there are any concerns about the conditions they are being kept in, this should also be reported to the RSPCA.

13. Vermin

If any evidence of vermin is found, the local environmental health department must be informed.

14. Further Reading

14.1 Relevant chapters

Risk Assessments

Inherent Jurisdiction of the High Court

14.2 Relevant information

Self-neglect at a Glance (SCIE) 

Working with People who Self-Neglect (Research in Practice)

Making Safeguarding Personal in Self-Neglect Workbook (Local Government Association)