Is Diogenes Syndrome a Mental Disorder? A case study

 

Harry is a man in his late 80’s. He is divorced and lives alone in his own home. He has a number of physical health problems associated with old age and is provided with a package of home care by the Older People’s Social Services Team.

He likes cats and encourages strays to enter his home, feeding these visitors and encouraging them to take up residence in his living room, which is also where he sleeps. The whole house is in a state of squalor and decay, with large piles of rubbish and possessions strewn throughout the house. It is virtually impossible to go upstairs. He likes to keep his house warm and has electric heaters on constantly. He has also invented a system of heating his kitchen by piling firebricks onto the hotplate of his gas cooker.

The carers, who shop for him and ensure he takes his medication, are becoming increasingly reluctant to enter the house because they believe that it is infested with rats. Carers have complained that rats “the size of cats” have been seen cavorting on his bed. The local Environmental Health Officer has been contacted. The support plan is at risk of collapse.

Things get even worse. Some clothing that he had hung too close to his heater catches fire and the fire brigade are called. He begins to ring the out of hours social services number with unreasonable demands, and is abusive to the people taking his calls.

The local psychogeriatrician is asked to make an assessment. She visits him at home with Harry’s social worker and concludes that it is difficult to make a thorough assessment in the conditions, but thinks he probably has “mild vascular dementia.” Further assessment cannot be made without an admission to a psychiatric ward. Harry will not agree to an informal admission and gives a graphic description of what will happen to anyone who tries to make him go to hospital.

I am asked to assess Harry. I speak to the psychogeriatrician, who has visited Harry a couple of times. She is herself in two minds about whether or not Harry is detainable, but on balance decides that an admission for assessment would be appropriate and provides me with a medical recommendation.

I spend the morning gathering information from the social worker, social services files, and the nearest relative, a son who lives out of the area. He tells me that his father has always been a difficult man, who was physically abusive to him as a child and made his mother’s life a misery. He rings him at least once a week and visits him occasionally. He says that his father’s house has been deteriorating for at least 15 years, ever since his mother finally left him. He’s a stubborn man, he says. You will have difficulty persuading him to do anything he doesn’t want to do.

I arrange to visit with the social worker and Harry’s GP. The two GP practices in the town take turns to have him on their books, because he is such a difficult patient. Based on the evidence, I am already leaning towards a decision to detain for assessment.

The house is exactly as described. We enter his living room, where he spends nearly all his time. Cats rummage through the heaps of rubbish.

Harry is sitting on his bed, dressed in rags, with a straggly beard. He is watching television. He welcomes us when we enter, and I introduce myself. I ask him some basic questions designed to check out the degree of dementia. He had watched the England World Cup qualifying match the previous evening, and could tell me not only the final score, but also the half-time score and even who scored the goals. When I discussed in more detail the purpose of our visit, he becomes more hostile, and asks us to leave.

The GP the social worker and I huddle in his kitchen. It’s a difficult decision to make, in view of the pressure to admit, and the real concerns about Harry’s safety. The trouble is, I can find no evidence of dementia or any other mental disorder. The GP agrees with me. On this basis, I can’t justify detention in hospital.

Harry is not happy we are talking about him. He insists that we leave, shouting and repeating this in my face. He won’t let me tell him what our conclusions are and bundles us out of his house.

Some sixth sense tells me his social worker isn’t happy with the outcome. On the pavement outside, I discuss the reasons for my decision with him.

Social workers often find themselves dealing with people whose behaviour is eccentric and considered unacceptable by their community, people who, although no danger to others, appear to live in situations of permanent risk, and have lifestyles others find unacceptable or repugnant. It’s often the task of social workers to enable such people to continue to live as safely as possible, to maintain them in the community in the way they would like to live. It is only appropriate to consider compulsion if it can be established that they do not have the mental capacity to make choices about how they live. One of the basic tenets of the Mental Capacity Act is that people have the freedom to make unwise decisions.

Harry may or may not have Diogenes Syndrome: a description applied to people like Harry, who live in situations of domestic squalor, self neglect, social isolation and who tend to hoard rubbish. However, this is not a mental disorder in itself. Harry is clearly not a very nice man; but then he has always been a not very nice man, and this does not constitute a mental disorder either.

Things continue to deteriorate. The carers continue to complain about the rats. The social worker arranges for a visit with an environmental health officer.

Pressure mounts on me to revise my decision, so I attend a case discussion with the psychogeriatrician and the social worker. Mainly on the basis of the reports of rats and the risk to Harry’s health, I agree to another assessment.

The psychiatrist, the social worker and the GP gather on the pavement outside Harry’s house. The social worker visited Harry’s home with the Environmental Health Officer that morning, and tells us that the officer, who is an expert at detecting the presence of vermin, inspected the house from top to bottom, as well as searching the overgrown garden. He could find no evidence of rats – no rat runs, no droppings, no urine, no evidence of chewing – nothing.

This makes a significant difference. The carers have no reason to refuse to enter the premises. It reduces the risk factors. We decide to try to some changes to his medication to see if this reduces his agitation in the evenings. The social worker is resigned to trying to continue to maintain Harry in the community.

Diogenes Syndrome and the Mental Health Act

Members of the public often become very alarmed and even affronted and incensed about people in the community who chose to live in unusually squalid or insanitary conditions. Complaints may be made to the police or social services, with demands that “something” must be done about them. In extreme cases, there can be considerable media publicity about people found dead in their homes surrounded by filth and clutter.

Social Services are often the first to be contacted about such people, as are secondary mental health services. Over the 35 or so years I have been a social worker, I have worked with many of these people. While the majority of them exhibit signs of eccentricity and often an unwillingness or inability to engage in social interaction with others, I have found few of them to have had any significant mental illness or disorder. Often, the focus of work with them has been, not necessarily to significantly change their living conditions, but to support them in the way of life they have chosen while trying to reduce risks to their health and safety, and to protect them from the antagonism of the local community.

I’ve already written on this blog about a couple of cases where I have assessed people who were living in conditions deemed unacceptable or hazardous: Harry, an elderly man, whom I wrote about in July and December 2009, and Stella, a middle aged woman, in October 2010. The psychiatric grounds for detention of Harry were tenuous, and Stella, although eccentric, showed no signs of mental illness.

I was recently asked to assess Bernard, a man in his 50’s who was living alone in such conditions. His GP had made an urgent referral after being called out to him by the local Police Community Support Unit. She reported that: “The house is uninhabitable and is a health risk to the patient and his neighbours. There are strewn newspapers and garbage piled high to the ceiling in the rooms, the walls are coated with black dirt. His feet are purple and his toenails are about 10 cm in length. I could not see beyond the dirt on his feet to tell if he has gangrene. He will need a mental health assessment for the possibility of Diogenes Syndrome.”

Pretty nasty, then. Very alarming. Something certainly had to be done. So I decided to see him for a preliminary assessment with a nurse from the CMHT. In the meantime, something niggled at me. Bernard? Bernard? Hadn’t I assessed someone under the MHA in the dim and distant past with that name? Looking through my records, I discovered that I had indeed assessed someone of the same name and age, but with a different address, all of 18 years ago. I had a dim recollection of the circumstances: he had been living with an elderly aunt and uncle who had both died and he was in the process of being evicted from their council house as he did not have a tenancy. All I could now recall was that I had not detained him under the MHA, and he had not become a patient of the CMHT.

When we arrived his front door was open and he was standing in the lobby with a pile of shoes in front of him trying to find a pair that would fit. This meant that we could see the state of his feet. I could confirm that his toenails were actually only 1 or 2 cm long ( ½ inch rather than 4 inches), and that his feet were extremely dirty. He eventually managed to put a suitable pair of shoes on and was able to attend to our visit. He had long, greasy hair, a straggly beard partially obscuring his grimy chest, and was wearing a stained and filthy waxed jacket, and, as far as we could see without looking too closely, very little else.

Although he invited us into the flat, in view of the smell emanating from the open doorway, and the fact that the door could only open a little way because of the junk in his hallway, meaning that we would have to squeeze through the narrow, and very dirty opening, we decided to conduct the assessment in the lobby outside.

Throughout the assessment, he presented with excellent recall of dates and events throughout his life. He immediately recognised me from our encounter 18 years previously, and recalled the exact year and the circumstances. He was orientated in time and place. There was no evidence of dementia.

In fact, on interview, Bernard presented with no evidence of mental disorder. He certainly fulfilled the criteria for a diagnosis of “Diogenes Syndrome”, but as I have observed before, that is not in itself a mental disorder. There was no evidence of psychosis or delusional thinking. Objectively he did not appear depressed, and stated that he did not think he had any mental health problems. Although there appeared to be a history of anxiety, he did not present as anxious, and in fact welcomed the opportunity to converse with us. He did not express any significant concern about his living conditions, although did admit that the house was untidy, and did not feel that he needed any help to sort it out. In short, despite the objectively appalling state of his living conditions and personal hygiene, there was no evidence that this had arisen as a result of a mental disorder, and there was consequently no evidence at all that could justify his detention in hospital under the Mental Health Act. Indeed, he did not even meet the eligibility criteria for receiving services from the CMHT.

An interesting article in Clinical Geriatrics (Volume 13 - Issue 8 - August 2005: “Diogenes Syndrome: When Self-Neglect is Nearly Life Threatening” -- Badr, A, Hossain, A , and Iqbal, J) gave a similar case study. Although concentrating on the geriatric aspects of Diogenes Syndrome (most of the people I have seen have not been elderly) the article reaches some interesting conclusions. The authors quote Karl Jaspers, who: “proposed that this condition does not constitute a newly occurring psychopathological entity, as the whole picture is understandable from each subject’s personality and stressful life events. He emphasized that the characteristics of the premorbid personality play an integral role in the pathogenesis of the syndrome. His view of this syndrome was that it represents a lifelong subclinical personality disorder, probably of a schizoid or paranoid type, that turns gradually into gross self-neglect and social isolation.” In other words, it is something that can slowly creep up on slightly odd people over a long period of time

This analysis would certainly accord with my own experience of people with this presentation, and would certainly apply to Bernard, who reported that he had received psychiatric care, including ECT, as a teenager, although it was unclear why, and until his aunt and uncle had died had always lived in the households of others, and had therefore probably never acquired the skills to maintain his own household.

So what could be done with Bernard, and others like him? Since he could not be said to lack capacity, the “best interests” powers under the Mental Capacity Act, which permit people to take actions on behalf of a mentally incapacitated person on the basis that the action is in their best interests, would not apply to him. People have a right to make “unwise decisions”, providing they have capacity to do so. This could include such “unwise” actions as drinking too much alcohol, marrying someone you hardly know on a whim in Las Vegas, or refusing to wash for months or years.

Possibly the only route to addressing Bernard’s circumstances through legislation rather than gentle persuasion would be Sec.47 of the National Assistance Act 1948, which provides powers of “removal to suitable premises of persons in need of care and attention.” Although it might be thought that an Act created by the new landslide Labour Government just after the Second World War would long ago have been repealed, this still remains on the statute books.

This is a legal power that is quite often talked about in social work circles, but very rarely used. It has to be established that "The person is suffering from grave chronic disease OR being aged, infirm, or physically incapacitated, is living in unsanitary conditions AND the person is unable to devote to himself and is not receiving from other persons proper care and attention AND his removal from home is necessary either in his own interests or for preventing injury to the health of, or serious nuisance to, other persons". If all of these conditions can be satisfied, the person can then be taken to a hospital or a care home for medical treatment or care against their will.

I have only ever been involved in one such case in my entire career, and that was over 30 years ago. It involved an elderly lady living alone who was no longer able to manage and was becoming increasingly frail and weak. Although she did not have dementia, she consistently refused all offers of help and support. An assessment under Sec.47 of the National Assistance Act 1948 was undertaken, involving a “community physician” but when it came to it the lady, clearly impressed by this doctor’s title, agreed to go into hospital voluntarily.

However, even this power is now more than likely to fall foul of more recent legislation. The Department of Health has suggested that Sec.47 could be in breach of the Human Rights Act. In a brief guidance document published in August 2000 ("The Human Rights Act, Section 47 of the National Assistance Act 1948 and Section 1 of the National Assistance (Amendment) Act 1951"), it reasonably notes that use of this section may breach Article 5 – the right to liberty, and Article 8 – the right to respect for private and family life. So gentle and persistent persuasion to accept assistance probably remains the only option for trying to help people like Bernard.

Phew! A bit of a dry and technical post today, perhaps. Back to foul language and more threats of bodily harm to AMHP’s next time.

Update - Harry

I last wrote about Harry in July 2009. Harry was an elderly man living alone in squalor, probably with Diogenes Syndrome, causing carers and other professionals (including the Fire Service) problems, whom on two occasions despite the risks I did not detain under the Mental Health Act. I concluded then that I had not heard the last of him, and I also speculated, tongue in cheek, that another AMHP might be asked to assess him.

Well, that’s exactly what happened. A couple of months later, while I was away on holiday, there was another request for a Mental Health Act assessment. This time, the AMHP concluded that it was appropriate for him to be detained under Sec.2 for assessment and he was admitted to the local psychogeriatric ward. I have no argument with that – AMHP’s act independently, and two AMHP’s may validly reach different conclusions from the same information. In any case, situations can change, risk factors may vary from day to day, and I am sure that the AMHP who detained him made the correct decision at that time.

A few weeks later I was asked to assess him again, this time for detention under Sec.3 for treatment. When I interviewed him in the hospital he was clearly in a much better physical condition than when I had seen him at home. He was clean, well groomed, had put on weight, and was obviously enjoying the comparatively salubrious environment of the hospital ward. But I had to decide whether, in all the circumstances of the case, it was most appropriate for him to be detained in hospital under the MHA.

There was some evidence of memory problem, he did not remember my visit to him a few months before, was vague about other facts, and he certainly did not regard his home conditions as in any way a problem. When I discussed the reason for my visit he became furious, swearing at me and threatening to harm me. But did this amount to anything significantly different from my previous assessment?

This time he did have a diagnosis of vascular dementia, so certainly had a mental disorder within the meaning of the Mental Health Act, but was it of a nature or degree to warrant his compulsory detention?

I thought long and hard about my decision. And in the end I applied for his detention under Sec.3 as requested.

I was covered legally. There were two medical recommendations. He had a mental disorder. But I still felt uneasy.

What swayed me in the end was the fact that circumstances had now irrevocably changed. My previous decision was about whether or not to remove him from his home. My decision now was about whether or not to allow him to return to his home. With this decision came even greater potential risk to Harry. He had already made it very clear to me that if he were not detained he would insist on going back to the squalor and fire hazard that was his house, and this time would probably be even more distrustful of authority that he had been before. His risks of being at home would be significantly greater now than they had been earlier. If he were ever to have a chance of surviving in a community setting, there would have to be considerable changes in his home circumstances.

And strangely enough, detention under Sec.3 could facilitate that, since any elements of his aftercare package would now have to be paid for by the local authority and/or the NHS. He would no longer be charged for home care, and indeed, any works to improve his home, through a major cleaning programme or even alterations to the house, could also be free of charge. He was wily enough to see that there could be advantages to his continued detention – although he would never admit it.

Is Diogenes Syndrome a Mental Disorder?

Harry is a man in his late 80’s. He is divorced and lives alone in his own home. He has a number of physical health problems associated with old age and is provided with a package of home care by the Older People’s Social Services Team.

He likes cats, and encourages strays to enter his home through an ever open catflap in his front door, feeding these visitors and encouraging them to take up residence in his living room, which is also where he sleeps. The whole house is in a state of squalor and decay, with large piles of rubbish and possessions strewn throughout the house. It is virtually impossible to go upstairs. He likes to keep his house warm, and has electric heaters on constantly. He has also invented a system of heating his kitchen by piling firebricks onto the hotplate of his gas cooker.

The carers, who shop for him and ensure he takes his medication, are becoming increasingly reluctant to enter the house because they believe that it is infested with rats. Carers have complained that rats “the size of cats” have been seen cavorting on his bed. The local Environmental Health Officer has been contacted. The support plan is at risk of collapse.

Things get even worse. Some clothing that he had hung too close to his heater catches fire and the fire brigade are called. He begins to ring the out of hours social services number with unreasonable demands, and is abusive to the people taking his calls.

The local psychogeriatrician is asked to make an assessment. She visits him at home with Harry’s social worker, and concludes that it is difficult to make a thorough assessment in the conditions, but thinks he probably has “mild vascular dementia.” Further assessment cannot be made without an admission to a psychiatric ward. Harry will not agree to an informal admission, and gives a graphic description of what will happen to anyone who tries to make him go to hospital.

This is when the Masked AMHP is brought in. I speak to the psychogeriatrician, who has visited Harry a couple of times, and who clearly is herself in two minds about whether or not Harry is detainable, but on balance decides that an admission for assessment would be appropriate, and provides me with a medical recommendation.

I spend the morning gathering information from the social worker, social services files, and the nearest relative, a son who lives out of the area. He tells me that his father has basically always been a difficult man, who subjected him to physical abuse as a child and made his mother’s life a misery. He rings him at least once a week, and visits him occasionally. He says that his father’s house has been deteriorating for at least 15 years, ever since his mother finally left him. He’s a stubborn man, he says. You will have difficulty persuading him to do anything he doesn’t want to.

I arrange to visit with the social worker and Harry’s GP. The two GP practices in the town take turns to have him on their books, because he is such a difficult patient. We also arrange for the police to be on standby. On the basis of the evidence, I am already leaning towards a decision to detain for assessment.

The house is exactly as described. We enter his living room, where he sends nearly all his time. Cats sidle around the heaps of rubbish.

Harry is sitting on his bed, dressed in rags, with a straggly beard. He is watching television. He welcomes us when we enter, and I introduce myself. I ask him some basic questions designed to check out the degree of dementia. His answers reveal him to be orientated in time and place. He had watched the England World Cup qualifying match the previous evening, and could tell me not only the final score, but also the half-time score and even who scored the goals. When I talk to him in more detail about the purpose of our visit, he becomes hostile, and asks us to leave.

But I need to discuss the assessment with the GP and social worker. We huddle in his kitchen. It’s a difficult decision to make, in view of the pressure to admit, and the real concerns about Harry’s safety. The trouble is, I can find no evidence of dementia or any other mental disorder. The first legal requirement, that the patient has to be suffering from a mental disorder of a nature or degree sufficient to warrant detention in hospital, is not fulfilled. The GP agrees with me. On this basis, I am unable to justify a detention in hospital even for assessment.

By this time, Harry is justifiably annoyed with us, since he realises we are talking about him and he doesn’t like it. He starts to insist that we leave, shouting and repeating this into my face. He does not let me tell him that he would be satisfied with the outcome of my assessment, and bundles us out of his house.

Some sixth sense tells me the social worker is not happy with the outcome of the assessment. On the pavement outside, I discuss the reasons for my decision with him.

Social workers often find themselves dealing with people whose behaviour is eccentric and considered unacceptable by their community, people who, although no danger to others, appear to live in situations of permanent risk, and have life styles others find unacceptable or repugnant. It is often the task of social workers to enable such people to continue to live as safely as possible, to maintain them in the community as much as possible in the way they would like to live. It is only appropriate to consider compulsion if it can be established that they do not have the mental capacity to make choices about how they live. One of the basic tenets of the Mental Capacity Act is that people have the freedom to make unwise decisions.

Harry could probably be described as having Diogenes Syndrome: a description applied to people like Harry, who live in situations of domestic squalor, self neglect, social isolation and who tend to hoard rubbish. However, this is not a mental disorder in itself; a study of patients with this syndrome concluded that only half actually had a mental disorder. (Diogenes Syndrome: a clinical study of gross neglect in old age (Clark AN, Mankikar GD, Gray I, Lancet 1975 Feb 15;1(7903):366-8). Harry is clearly not a very nice man; but then he has always been a not very nice man, and this does not constitute a mental disorder either.

Things continue to deteriorate. He persists in making abusive and unreasonable calls to the out of hours service. The carers continue to complain about the rats. By now, they appear to be approaching the size of small hippos. The social worker arranges for a visit with an environmental health officer.

Pressure mounts on me to revise my decision, so I attend a case discussion with the psychogeriatrician and the social worker. Mainly on the basis of the reports of rats and the risk to Harry’s health, I agree to another assessment.

After lunch, we gather on the pavement outside Harry’s house with the GP. The social worker approaches. He visited Harry’s home with the Environmental Health Officer that morning, and tells us that the officer, who is an expert at detecting the presence of vermin, inspected the house from top to bottom, as well as conducting an expedition into the overgrown garden. He could find no evidence of the presence of rats whatever – no rat runs, no droppings, no urine, no evidence of chewing – nothing.

This makes a significant difference. The carers have no reason to refuse to enter the premises. It reduces the risk factors. We decide to try to introduce an antipsychotic into his medication in order to see whether or not this reduces his agitation in the evenings. The social worker is resigned to trying to continue to maintain Harry in the community.

I suspect that I have not heard the last of Harry. I will probably be asked to pay him another visit sooner or later. (Unless they ask another AMHP to assess him!) The pressure is likely to continue to mount on me to detain him under Sec.2 for assessment. After all, it would only be for up to 28 days, and only for assessment. At what point should I conclude that there really is no alternative?