Help can delay the inevitable

Case notes

Practitioner: Bertha Scott, social worker and access team leader

Field: Older people with dementia

Location: Suffolk

Client: Eleanor “Nelly” Villiers, 73, has been diagnosed with moderate to severe Alzheimer’s disease. She lives with, and has been the main carer of, her physically impaired husband George, also 73, who has multiple sclerosis and her son Harold, 34, who has Down’s syndrome.

Case history: Despite her apparent general well-being, Nelly’s dementia began to affect her ability to care. George, in particular, became very frustrated and angry at her inappropriate caring and increasing inability to follow his instructions. George, who displayed no insight into Nelly’s condition, began subjecting her to psychological abuse and given his temper, physical abuse was suspected, although there was no history of domestic violence. It was several months before George realised Nelly needed help. Despite Nelly’s cognitive deterioration, which affected her verbal communication, she strongly signalled that she wished to remain at home.

Dilemma: To remain at home, significant support would be required but George was refusing to accept outside help, or be assessed financially as he held enduring power of attorney for Nelly.

Risk factor: Nelly was at risk of psychological and physical abuse by her intolerant husband as her inability to care caused anger and rejection.

Outcome: With support, Nelly remained at home for a further two years before requiring residential care. George visits once a week, and Harold twice a week.

For Eleanor “Nelly” Villiers life had been pretty much sorted. She lived to care. Even with her family grown up, the caring continued. At home she cared for her youngest son Harold, who has Down’s syndrome. Her husband George developed multiple sclerosis and she had to do many things for him.

He was difficult, temperamental and prone to bouts of anger. But she loved her family and her family loved her. But gradually she started to forget things and did things wrong. Nelly had developed Alzheimer’s disease.

Concerned that Nelly might be being psychologically and physically abused by her husband George, her GP referred her to an access team – a multidisciplinary support service for people with dementia, where the case was picked up by Bertha Scott who at the time was team leader, but who has now moved on to another job.

“Nelly was still able to communicate verbally and she consistently said she was happy at home,” says Scott. “She felt strongly about her caring role and showed the utmost loyalty, love and dedication towards George and Harold. At the beginning George did not welcome my visits, maintaining they were managing well without outside help, and it took some perseverance and tact to get in there. Nelly and Harold, on the other hand, were always welcoming. Although Nelly could never remember who I was, she knew I was a friendly visitor with whom she felt comfortable.”

Once Scott felt more or less accepted by George, she began to pop in unannounced. “On one occasion I could hear George shouting when I was at the door. Nelly had not been able to prepare tea under George’s instructions. Both needed a great deal of reassurance and comforting, and I helped with tea. That evening I spoke openly with George explaining that Nelly’s condition would inevitably deteriorate and that abuse would not be tolerated. Perhaps understanding my genuine wish to help, George agreed to evening home care visits and day care services for Nelly twice a week,” says Scott.

Scott made sure that the carers helped Nelly fulfil some of her caring tasks with her family, reaffirming her role and raising her self-esteem. “I continued contact ensuring a balance between Nelly’s right to choose to be at home and her need for help and protection. It also helped her husband with his wish to keep the family together and enabled him to see the need for help in order to achieve his aim,” she says.

“I tried to understand and make sense of the family situation within the context of its own life history, relationships, personalities, their needs and their interdependence. George’s strong personality and lack of tolerance were not helped by his own illness and the needs of Nelly and Harold – hence his bad temper. However, he was desperate to keep his family together. Harold adored his mother and was being affected by her changes and his father’s frustration. The couple’s married daughter, who was in close contact with her parents, did not express concerns about George being abusive. Neither did George’s brother who lived next door. I often met with a family friend who visited twice a week, but she never raised concerns about George’s behaviour,” says Scott.

Despite several GP reports of bruises, no physical abuse was ever witnessed. Scott continues: “George’s shouting and impatience worried the carers involved, who needed management support to continue working with the family. In the absence of Nelly’s memory it was necessary to tap into her emotions. For example, if carers reported Nelly being bruised or upset in the morning, her emotions would be closely observed at the day centre and special attention paid to her reaction when going home and on arrival. Nelly was always happy to go home, showing no fears or apprehension. An increase in home care meant Nelly spent very little time with George on her own.”

Inevitably, Nelly’s condition deteriorated. She often challenged George, threatening him with her fists if he asked her to do something. “In the end, Nelly’s needed specialist residential care. She couldn’t give her opinion but I felt certain that she was ready for the change,” says Scott, who recognises the importance of the contribution and co-operation of the many agencies involved with the family. “I personally needed reassurance and the opportunity of sharing responsibility with other professionals, which I think is essential when assisting complex cases involving significant risks,” she says.

Arguments for risk

• Nelly had made very clear in her way that she wanted to stay at home and Scott and her colleagues were right to work with her and the family to meet her wish. They put in place protective measures and increased the home care help to reduce the time Nelly would be alone with George. Others involved with the family had no concerns about possible abusive behaviour. Nelly’s eating and sleeping patterns indicated contentment.
• Whenever there was a concern over a bruising or if Nelly seemed distressed, her state of mind was monitored by the various agencies that interacted with Nelly through the course of the day.
• Despite the difficult practical arrangements and George’s frustration, anger and rejections, there was a strong family bond and unity that deserved to be supported.
• George gradually accepted the need for carers and understood this was the only way the family could remain together.

Arguments against risk

• George had been used to Nelly as his main carer and having her do things in the way he wanted. Always a temperamental man, his intolerance was bound to increase as Nelly’s capacity to care dwindled. This resulted at the very least in him shouting at her and rejecting her. This psychological and emotional abuse was detrimental to Nelly, possibly causing her to make more mistakes and increasing George’s frustration further.
• The home care staff clearly had difficulties working with the family and George in particular. Both they and the GP had strong concerns that Nelly’s bruising had been caused by George. Given Nelly’s fragile state, this could have escalated to dangerous levels.
• It was clearly proving very expensive to maintain the level of support that could keep the family together, cared for and protected. By deciding against some form of very supported or residential care, the workers were simply delaying the inevitable.

Independent comment

To put off the inevitable (or the very probable) is by no means always to take the line of least resistance, writes Jef Smith. A delay in Nelly Villiers’ admission to a home gave her, her husband and her son two further years of living together, with a quality of life, however troubled that may have been, which they all clearly valued.  

Scott was right to be concerned, however. Nelly was certainly being abused, psychologically and probably physically too, and the reassuring noises from the friend and other family members, who had obviously become accustomed to George’s harsh behaviour, did not constitute a convincing case for doing nothing. Much more significant was Nelly’s clearly communicated wish that she wanted to carry on trying to cope. People with dementia often know best what most contributes to their well-being, and Scott sensitively picked this up. 

The social worker built a powerful relationship with all of them. This enabled her to monitor Nelly’s situation, to provide her with support at the day centre, to get George’s acceptance of the home care workers, to prepare mother, father and son for Nelly’s admission to a home, and to lay sound foundations for the new care arrangements they would all eventually come to accept. 

The services provided were less expensive than the residential places for all three members of the family that might well have been necessary if hasty action had been taken at the outset. 

Jef Smith is a writer, trainer and consultant specialising in the care of older people.