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Alzheimer’s disease - not just a mental illness

Alzheimer’s disease - not just a mental illness

Donna Davenport was moved by the watching the sad story of Malcolm, a patient with Alzheimer's disease, and his wife Barbara on TV. As nurses we have a duty to protect our elderly and care for them with respect and dignity. Clearly this is not always the case

Anyone watching Malcolm and Barbara in "Love's Farewell" on ITV1 on Wednesday 8 August cannot have failed to have been moved by the desperately sad story of Malcolm, who at 51 years of age was diagnosed with Alzheimer's disease.

He had been an exceptional pianist and composer and was husband to Barbara and father to their children. He had given permission for his story to be told on being diagnosed with Alzheimer's in the hope of increasing awareness and providing viewers with a better understanding of the disease.

I wonder though if he knew that this would mean being filmed while being dressed in incontinence pants and sitting on the toilet, which at times made for uncomfortable viewing. As a nurse it made me think about privacy and dignity, which should be paramount in all aspects of care in whatever setting.

However, such scenes made it quite clear the Alzheimer's is not just a disease of the mind and that the physical and social effects are just as debilitating and require high levels of multiprofessional care and compassion to deal with.

This disease will have affected many of us either personally or professionally in primary care. Primary care and community nurses are crucial in identifying problems at an early stage to support the patient, carer and family members. The programme focused very much on his care at home with his wife Barbara as fulltime carer. Figures suggest that in the UK one in eight of the population is a family or unpaid carer although this figure may be severely underestimated.

Malcolm occasionally went into respite care, but their experiences of such institutions were less than satisfactory. Indeed one such occasion shown came across like a scene from "One Flew Over the Cuckoo's Nest", where staff seemed to not even acknowledge Malcolm as they hurried by. Barbara felt that he deteriorated quickly after each episode of respite care.

It was clear from the programme that Malcolm was cared for mostly at home with care and compassion from his wife and with support from the multiprofessional primary healthcare team. It seems that Malcolm required hospital services on very few occasions. Within primary care we are all too familiar with the target to reduce hospital admissions, and this condition is one that can be provided for in the community. However, funding and resources are essential if this care is to be of a high standard.

The programme, filmed over a four-year period, showed clearly the devastating effects of this condition on both the patient and their family, and in particular the toll it takes on the carer. The effects were clearly not just mental but physical and social. Barbara talked about "friends" who, as the condition worsened, crossed the road rather than talk to them. Was this because they were embarrassed or did they just not understand how to deal with it or what to say? In the later stages Malcolm was bedridden and it was harrowing to watch Barbara see her beloved husband's condition deteriorate so aggressively.

The Alzheimer's Society provides a wealth of support and advice for patients and their families living with the condition and not just in times of crisis. It is essential that nurses caring for patients with Alzheimer's and other forms of dementia are aware of the many resources available.

Revisions to the new GMS Contract (2006/07) Quality and Outcomes Framework now requires practices to have a register of patients with dementia. Is yours up to date and accurate?(1) Alongside this is the indicator for practices to have a protocol for identification of carers and a mechanism for the referral of carers for social services assessment. Are all members of the primary care team aware of this and are there systems in place to alert everyone at times of crisis?

Practice nurses are crucial to ensuring that this is accurate and up to date, and that the needs of carers are assessed on a regular basis to pick up early signs of problems in their health and wellbeing, which in turn will have an effect of their ability to care for the patient they are looking after. The Princess Royal Trust provides a wealth of literature and support for carers and healthcare professionals and there are local organisations such as Signpost for Carers available.

It is recognised that there is a general low level of public and professional understanding of dementia and the government is to produce the first ever national dementia strategy in response to what it describes as "one of the great challenges now facing society". This is combined with the National Service Framework for Older People, which sets out eight clear targets that cover four themes:(2)

  1. Respecting the individual.
  2. Intermediate care.
  3. Providing evidence-based specialist care.
  4. Promoting an active healthy life.

Local delivery plans (LDPs) mean that primary care trusts can decide locally how these standards are met, and it is crucial that practice nurses and community nurses are involved in this decision-making progress.
 
As I write this blog news has just been published by Help The Aged that finds over half of nurses working with the elderly say they would not report cases of abuse for fear of making a mistake or repercussions. Thus is unacceptable. We have a duty to protect our elderly who are even more vulnerable when faced with illness and disability. How can we treat elderly patients in this way?

Many people after retiring continue to live wonderful, active lives and indeed contribute to society in many ways – two members of my own family, both over 75, do voluntary work at their local hospitals. If they ever become ill they should expect that they would be cared for with respect and dignity. As nurses we need to ensure that this is paramount. After all, one day, like it or not, we will be one of them.

References
  1. Department of Health. New GMS Contract. London: DH; 2006/07.
  2. Department of Health.National Service Framework for Older People. London: DH; 2001.

Resources
Alzheimer's UK

Help the Aged

Age Concern

Carers

Your comments: (Terms and conditions apply)

"I'm a CPN working in older people service in the south Essex. We do our best to treat all our clients with respect and dignity at all times within the resources that we have. However, I feel that older adults do have a rough deal. Their service has always been a 'cinderalla service' whereby they are the first to have their funding cut for the acute service, or even missed out. No matter how society tries, there is always, I feel 'ageism' or 'whoever shouts the loudest' get the services. As a CPN for over 10 years, I have seen services cut due to lack of funds, eg. Crossroads, day care, etc. I'm passionate about the care and services for the elderly, to maintain good practise and improve services, as I hope it will be there should I need them in my old age. Hopefully the powers to be are also aware of this" - Name and address supplied

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