Lives of squalor behind closed doors
Tackling self-neglect poses ethical dilemmas for health workers seeking to intervene in the lives of people who often want to be left alone
BEHIND CLOSED doors in communities around Ireland, there are older people living among us in conditions of unimaginable domestic squalor and neglect. However, it’s often not until they sustain a fall or become ill that the health or social services call to their homes and witness the sometimes shocking circumstances they live in.
Self-neglect can range from refusing to take medication or failing to eat properly to not washing or changing clothes, hoarding and even living without basic necessities such as electricity.
It is a serious public health and social issue that can occur across a lifespan, but is more common in older people and accounts for approximately 20-25 per cent of cases referred to the HSE’s Adult Protective Services (APS) in Ireland.
New research carried out at University College Cork highlights the many challenges and ethical dilemmas that self-neglect cases pose for the health services.
Mary Rose Day, lecturer at UCC’s School of Nursing and Midwifery, says there are huge challenges for workers in building up relationships with these vulnerable older people who have often refused help and want to be left alone.
Some are happy with the lifestyle they have chosen, while others may be unable to care adequately for themselves as there tends to be a high percentage of mental illness among this group.
“The identification of cases often comes at a chronic stage of self- neglect. The person is living in these circumstances for a long time, but it’s only when they fall or get sick and a professional calls to their home that they see the conditions they are living in.
“There is a need for more community awareness about the conditions that our older neighbours might be living in, so that these cases can be caught before they become chronic,” she says.
Self-neglect is included in the definition of elder abuse in the US, but not in Ireland or the UK. The HSE 2008 policy Responding to Allegations of Elder Abusestates that the definition of elder abuse “excludes self-neglect and crimes committed by strangers”.
However, it continues: “This policy may be followed in circumstances where concern has arisen due to the older person seriously neglecting their own care and welfare and putting themselves or others at serious risk.”
The dearth of international research in the area of self-neglect led Day – along with her co-authors Dr Patricia Leahy-Warren and Prof Geraldine McCarthy – to carry out a study to explore the views and experiences of senior case workers from adult protection services.
She then followed this up with the first Irish study to observe and describe the living conditions of adults who experience self-neglect and to detail their life stories. What she discovered was harrowing.
“Some of these people are living in appalling squalor and neglect with hoarding or a lot of animals in the house with them. Some might be refusing to take medication they need for their health, or they might not be eating, and sometimes their behaviour can be life threatening. One house had no electricity and it was like walking into a house from the 1940s.”
Day met eight adults identified through the APS nationally as self-neglectful. The six men and two women ranged in age from 65 to 87. Four had never married, one was married, one widowed and two divorced.
Alcoholism featured highly in keeping with the international literature on self-neglect, and service refusal was a big issue.
“They were all very isolated from their communities and some from their families. There was loneliness and vulnerability, with two of the male participants exposed to burglary and name calling. There was evidence of frugality with bills overdue, some had assets but no money to spend on a day-to-day basis.”
Day points out that her research was limited as it captured the stories of only eight people and she recommends a more in-depth exploratory study in this area.
She remarks: “There is a huge issue internationally in identifying these cases. I would suggest that we are only seeing the tip of the iceberg and I hope to do more work in this area. It can take a case worker two years or more to build up a relationship with an older person who self-neglects, so it’s not an easy area to study.”
In her earlier survey of senior case workers from the APS, Day found that mental health issues were involved in about 50 per cent of cases, while some were people who would be regarded as “eccentric”.
“One of the participants described a beautiful woman aged 90 years with lice all over her body, sitting in the same ragged clothing for months, the smell of urine, her nails long and twisted, and dirt ingrained in her hair.
“There was the belief that she was feeling unwell this week and was going to clean up next week when she felt better. She was living in a make-believe world. Was it because her arthritis got worse or maybe her pride would not let her accept help?”
The case workers noted common risk factors for self-neglect in their clients including chronic illness, addiction, dementia and frailty.
The challenges they highlighted included the management of case loads and resources, building relationships with clients and ethical issues around the capacity of the client to look after themselves adequately.
Day comments: “Capacity is a big issue. If a person doesn’t have insight into their self-neglect, when do the services step in and take over? This raises challenges and ethical dilemmas about the autonomy of the person and their right to have the lifestyle that they choose.
“The health services are managing a lot of people in communities and putting in supports to manage different aspects of their care.”
As well as calling for further research in this area, Day highlights the need to develop a screening tool for self-neglect in Ireland and to look at the whole area of intervention and assessment.