Dementia Centred

July 10th, 2017

A journey from Carer to Researcher

Reflection of Carer

When I first took on the role as carer for my dad around thirteen years ago I had very little knowledge or understanding of dementia and the impact it could have on a family, as well as the individual living with this disease.

When my dad was admitted to hospital, I became aware there was a clear lack of understanding of the impact of dementia and delirium in confused patients in a general hospital setting. To me, it seemed medics and nursing staff lacked the education and training to understand and appropriately diagnose and manage the care of a patient with dementia. Indeed some nursing staff’s aggressive/assertive style exacerbated my dad’s behaviour and situation. Furthermore, medics and nurses failed to listen appropriately to the family on admission to A&E where dad could not respond effectively himself.

In chaotic circumstances in A&E it exacerbated the situation resulting in escalating pressure on staff in that department at that time. On two occasions, medication management protocol was not adhered to. This resulted in dad lifting and storing a variety of medication, which we think came from other patients, without the knowledge of the nursing staff.

There was also a few occasions when dad was found walkabout; in another ward, in a lift and down a fire escape. With these distressed behaviours, I felt that I was made to feel dad was a nuisance.

When I asked any questions as legal guardian (which I felt were reasonable and asked in a nice manner), I sensed staff were suspicious of me and why I was asking such questions. Dealing with mental health officers, social workers, psychiatrists, doctors, nurses and mental health appeal tribunals was difficult, but I had to learn quickly to work with the team to get the best outcome for dad.

Once we managed our way through all this, dad was then delayed in his discharge. This caused all of us, including dad, significant anxiety and upset.

On reflection, I believe the experience had a significant detrimental effect on my late mothers deteriorating health too. Mum was dad’s main carer and the anxiety, stress and distress on us all was in no doubt significant.

Now, looking back, I feel the situation for families in similar circumstances has improved, which can only be a good thing, and I believe research projects and education have played a real part in these improvements.

Reflection on development of assessment

I have now become involved in research to improve lives for people with dementia and their carers. This opportunity has allowed me to witness first hand progress in dementia care since my experience above.

For example, there has been education and training for medics and nursing staff in caring for dementia patients in a general hospital setting. During this training I had the opportunity to give feedback from my personal experience. This has resulted in the development of an assessment tool for use in the acute hospital.

The assessment tool now means specially trained nurses conduct the AMT assessment on all patients aged 65 years or over on admission/within 24 hours of admission. This can determine the appropriate ward for the patient and the care required.

I have since observed the improvement in care and I am proud to have been able to contribute. I witnessed first-hand the level of scrutiny undertaken to evaluate the systems and standards of care and determine further improvement requirements.

Reflection of researcher

The opportunity to take part in this project, in a research capacity, has been an interesting and valuable experience. It has been a good opportunity for a member of the public to contribute to influencing better outcomes for patients with dementia in a general hospital.

I have learned so much from reading the research papers, attending project meetings and questioning statements. Having been included in the team I am quite amazed at the volume of work undertaken. The team provided a healthy debate with ability to challenge thinking, when necessary, to obtain the appropriate information.

The project findings and outcomes (including future interventions) will be really interesting to members of the general public with an interest in dementia care. 

The research Marion has been involved in will have its findings released in September 2017