Dr Joe McShane has seen first-hand what effect dementia can have on a loved one, and he is using his experiences to improve the quality of care for others. By Dan Parton.

In this article:

  • Joe’s story
  • Life as a carer
  • Care campaigner

Joe’s story

Dr Joe McShane knew from the start he was destined to marry Ethna Walsh – and so did she, although initially she was loath to admit it.

“One of my favourite stories and one of the nicest things Ethna ever said to me was: ‘I hate you, you bugger. I hate you and I know I’m going to end up being married to you!’” Joe laughs.

Ethna was right. The couple married in 1957, 10 years after meeting at Glasgow University while they were both training to become doctors.

More than 50 years later it is clear that Joe, 81, retains the same strength of feeling for his wife, even though in recent years Alzheimer’s has effectively denied them the chance of growing old together.

Every day Joe makes the short journey from his home in Manchester to Laureate House, part of the Manchester NHS Mental Health & Social Care Trust, to visit Ethna and to help feed her lunch. “The staff think she eats better when I’m around,” he says.

Despite the advanced state of Ethna’s condition – she’s in the foetal position and her upper and lower limbs are totally contracted – Joe believes she still recognises him when he visits. He points out that people with dementia are assessed by what they can say and do, but there is no way of measuring what they take in.

Nevertheless, Joe is certain Ethna enjoys her meals and she knows what she does and doesn’t like: “She used to love curry, but if you give her a curry-flavoured meal now she just spits it out.

“When Ethna has had enough of her first course she closes her mouth, but then when you give her something like ice cream or a crème caramel – oh boy – you see that going down.”

Life as a carer

Ethna’s decline has been slow, but Joe has remained by her side at every stage. Indeed, from Ethna’s diagnosis in April 1990 until she moved into full-time nursing care in October 1996 Joe was her sole carer, considering it his duty.

He admits that in some ways he was lucky to be her full-time carer: “I was available – we had taken pre-planned early retirement – I had good health and carers don’t often have that. I had no immediate financial worries – we had our superannuation – and our family were very supportive.”

Joe thought he would be able to care for Ethna at home for the rest of her life and was prepared for this until Ethna’s condition worsened.

From the late spring of 1996 her movements became appreciably slower and more laboured, so much so that Joe ordered a wheelchair for her. It was initially assumed that this decline was a result of the deterioration of her Alzheimer’s, but it turned out to be much more serious.

Joe clearly recalls the date when he found out; September 29, 1996: “I got her up and was taking her to the shower and said ‘stand there, darling,’ while I got her a fresh towel from the linen cupboard. But she collapsed and was in obvious agony and had to be admitted to hospital. Investigations revealed she had a collapse of the lumber and sacrum spine due to osteoporosis.”

After this Joe was told Ethna needed total nursing care – more than he could provide at home or what a conventional nursing home could offer. Instead, she was admitted to a specialist NHS nursing unit at Healy House, Manchester.

Ethna remained at Healy House until it was closed in 2001 when she, along with 10 other long-term care patients, was moved to another nearby NHS facility, Laureate House. Of the 10 that moved, Ethna is the only one still alive.

Joe puts her longevity down to the outstanding care she has received in the past 12 years: “Ethna couldn’t be looked after better. The very fact of her length of survival is testament to the good nursing care.”

Care campaigner

Moreover, since Ethna moved into residential care Joe has put his experiences as a carer to practical use. He regularly speaks at care conferences and works with new staff at the Manchester Mental Health and Social Care Trust – among others – to give a carer’s perspective on dementia.

Joe also works with his local branch of the Alzheimer’s Society aiding carer’s support groups and he has become a campaigner for dementia rights. While acknowledging that care for people with dementia has significantly improved in the past 20 years, he believes there is still much work to do: “I want to see quality of life being improved – I think that’s the essence of care.”

This is especially relevant in the advanced stages of dementia when the sufferer can no longer carry out basic daily living activities. “That can be a long stage but that’s where you can improve quality of life,” Joe says. “If people are malnourished, dehydrated, have bedsores or are left lying in pools of urine or faeces that’s not improving their quality of life. It sounds very basic, but it is tremendously important.”

Mandatory training for care workers would be a significant step in achieving this goal, he believes: “I feel it is important to have proper training centres, almost like academic nursing homes. There is no mandatory training required for working as a care assistant; so anyone can do it.”

But for Joe one of the most important aspects of dementia care is that it is positive, regardless of the circumstances: “We mustn’t be pessimistic or nihilistic about the situation, we have to be positive. There is life after diagnosis and that took me too long to appreciate. Things can be done.

“There is analogy between positive care and palliative care and hospices have taught us a lot; people’s quality of life can be improved even though they are suffering from an incurable, malignant disease. We have to treat people the way we would like to be treated ourselves and we have to respect their rights, status and privileges as well.

“We must acknowledge inadequacies, look at what we’re doing and say ‘is this the best way?’ But we mustn’t consider cash when we are considering care because that constrains thinking.”