Oxleas Advanced Dementia Service: patient stories

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Part of Co-ordinated care for people with complex chronic conditions

These accounts show the positive difference that co-ordinated care at Oxleas Advanced Dementia Service has made for patients and their families.

Mrs G’s story

Mrs G, a female patient in her 70s, developed vascular dementia. She became very agitated and was admitted to hospital. Within two weeks, she had lost weight, was distressed and ended up stranded on a dementia assessment ward. Staff on the ward found it difficult to see what could be done to alleviate her distress or to care for her. Following medication with anti-psychotics, anti-depressants and benzodiazepines she settled enough to go into a dementia specialist nursing home. Once there, she lost more weight and her distress continued.

Her husband asked the doctors for permission to take her home. They were reluctant and thought that it was unlikely to work, with a high possibility of death as a result. They thought she was unlikely to survive until her 50th wedding anniversary.

After discussing the possibilities with him they agreed that whatever happened, Mrs G should not suffer, although it seemed that going home would require a lot of support. Although the nurses and consultant psychiatrist were very worried about the plan to go home Mr G insisted, and after discussion it was agreed to try supporting him to care for her at home.

Mrs G did well and the team were able to stop all psychiatric medication as the agitation and distress settled. She gained weight and was happy being cared for by her husband, along with a small group of carers who supported him. She improved to such an extent that she was able to go on trips to shopping centres and the golf club. Mrs G survived for a further seven years, dying in bed after their 57th wedding anniversary.

Staff in the advanced dementia service attributed Mrs G’s long survival to good care and the slow progress of her vascular dementia. As a result of this case the team strives to help other families who want to take their loved ones from nursing homes and care for them at home.

This case study was reproduced and redacted with permission from Hope for Home.

Mrs K’s story

Mrs K was referred in November 2011 to the Bexley Advanced Dementia Care at Home project by the advanced primary nurse working within the project. She was already known to Oxleas mental health services but had been discharged in June 2011. Mrs K was diagnosed with moderately severe dementia in 2007 and had been in the care of the older adults community mental health team for several years. They had prescribed anti-depressants and anti-psychotic medication for the management of anxiety and agitation.

Staff from the Bexley team saw Mrs K at home for an initial assessment accompanied by her social worker and her husband who was the main carer. This was supplemented with information from the couple’s daughters; one was living locally and had been helping with practical aspects of her care, with the other helping to co-ordinate services mainly by phone and email.

In 2011, Mrs K was in the advanced stages of dementia – stage 7 on the Global Deterioration Scale. She needed help with all activities of daily living. She also had severe communication problems and was unable to express her needs but was occasionally able to tell her husband ‘I love you’ and smile.

It was clear from the first assessment that Mr K was a dedicated and loving carer who needed support in dealing with emotional and practical issues around his wife’s care. He was taking her out every day and spending all his time with her. He believed the care package recommended by the social worker was not necessary as he was able to look after her. However, the social worker and his daughters were concerned about him being under too much pressure without a care package, as he had his own health problems. They discussed placing Mrs K in a residential home but Mr K strongly opposed this.

After the first assessment, the service developed a care plan including referrals for continence assessment, moving and handling, and management of her pressure areas as well as psycho-education on dementia for Mr K. Update letters were sent to the GP and social services and copied to the family.

Over the Christmas period, when the Bexley team was not available, Mrs K was admitted with a urinary tract infection to an acute hospital outside the borough for three weeks. During the admission we liaised with the hospital, which was planning to discharge Mrs K to a care home, and advised them that discharge at home was safe as support was available from our team.

Between January and September 2012 Mrs K remained relatively stable. Initially we visited weekly and when a routine started to establish, every two to three weeks. Mr K became more and more competent in looking after his wife and his stress levels decreased.

In October 2012 a further deterioration was observed; she started to lose more weight and slept more. The community palliative care team became involved towards the end of October. She died at home peacefully and surrounded by her family on 4 November 2012.

Despite Mrs K’s needs gradually increasing between January and November 2012 she had no other hospital admission or A&E visit.

This case study was reproduced with permission from Oxleas Advanced Dementia Service.