The Time for Dementia programme was extremely valuable and I continue to use my knowledge and experience gained in practice now and going forward in my career. My experience of the Time for Dementia programme has informed my practice as a junior doctor, when I meet patients with a diagnosis of dementia and their families I have a much greater insight and understanding of the potential struggles that the individual and their loved ones are going through. The treatment and management I provide patients with dementia is more individualized to their needs and their families’ because I now have the insight into the journey they are on and attempt to understand what their specific needs are. I am in a position to educate and challenge misconceptions held by other members of the multidisciplinary team towards their understanding of dementia, sometimes often bleak and stereotypical perceptions of what living with dementia really means. I also feel more competent in supporting families through pre diagnosis, diagnosis and advanced care planning in dementia. Time for Dementia has also instilled in me transferable skills and understandings that ensures I treat the person behind the diagnosis in clinical practice.
Remembering that people aren’t their diagnosis of dementia and have other health conditions inclusive and exclusive of the disease. Dr Zoe Cashin, junior doctor It is nearly four am and I have been bleeped to see a patient in the ward who has been struggling to breathe.
I drag my tired body to see the patient in the dark. The patient is a 69 years old lady with a background of dementia and Huntington’s disease. She is being treated for sepsis secondary to urinary tract infection. I asked her how she is and she does not say much but keeps repeating ‘help’. I do a quick assessment head to toe and I am not clinically worried about her, but I can sense that she is scared. I hold her hand tightly to reassure her that she is safe here. Since I started my foundation year, I have not felt hesitant to approach patients with dementia. I try my best to be considerate and sensible. I
Pro gra m m es
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often reflect on our patient visits of the Time for Dementia studies during the medical school and remind myself that there is always more that could be done for patients with dementia and that value of love and of family bonds never goes away and needs to be promoted and supported at all stages of the dementia journey.
Unfortunately, there is still stigma around dementia and we clinicians cannot help but to find ourselves focusing on presenting complaints but not the person inside. I am planning to start my GP training next year and I am grateful that I will always have something to look back into and remind myself why I am doing this. Dr Jaewon Phee, junior doctor
Having little experience with dementia prior to starting my degree, the Time for Dementia programme gave me an insight of how families and patients with dementia live. Working in the community I visit a lot of people who are on their own, and many of these have dementia.
Previously, I visited a patient who had dementia, but unfortunately was not able to communicate verbally.
Through my discussions with the patients’ family, I was able to communicate with the patient through non-verbal communication. Luckily this particular patient did have family present. This isn’t always the case. Time for Dementia highlighted not only how important holistic assessments are, but also how important it is that families get the support they require. I firmly believe the programme has improved my confidence and reiterated the importance of treating everyone with the dignity and respect they deserve. It has also taught me to be more patient and understanding, which I now use in my daily practice. Jayme Hill, newly qualified nurse
Conclusions
The definitive evaluation of the programme is not yet completed. Any impressions at this point must therefore be made with caution, however all the initial information we have suggests that Time for Dementia develops students in ways that more traditional healthcare education does not. The testimony of student participants is that it helps students to develop appropriately positive attitudes, understanding and optimism at how well people can live with dementia.
The special ingredient in Time for Dementia is that it places the people with dementia and their families as the mentors and teachers of our students. They teach what is possible in dementia by sharing their experiences of life and of health care systems both positive and negative. Our students start to see the world though the experiences of their Time for Dementia families, they see what is done badly, and they resolve to act differently when they are in practice. The accounts above from the first tranche of students to transition into clinical practice following qualification give grounds for hope that this will happen.
Currently Time for Dementia is provided in the health schools in one region (Kent, Surrey and Sussex) in the UK, this is a proof of the concept. It is a complement to
more traditional education and is provided at relatively low cost (administration in the universities, Alzheimer’s Society support of the person with dementia and family network and travel). If the data continue to be positive, the next phase should be to roll it out in other health schools nationally and internationally. There is certainly no lack of people with dementia or family members who are willing to participate. It appears that this is one small, relatively simple thing that can be done that is likely will make modest positive changes to practice.
The real challenge to healthcare in the 21st century is how to provide good quality care for older people with multimorbidity as exemplified by people with dementia.7 Time for Dementia helps us provide a workforce willing and able to meet and beat this challenge.
References
1 Alzheimer’s Disease International. 2016. World Alzheimer Report 2016: Improving healthcare for people living with dementia: Coverage, quality and costs now and in the future online: https://www.alz.co.uk/
research/WorldAlzheimerReport2016.pdf Last accessed 21 August 2019.
2 Banerjee, S., Farina, N., Daley, S., Grosvenor, W., Hughes, L., et al.
2017. ‘How do we enhance undergraduate healthcare education in dementia? A review of the role of innovative approaches and development of the Time for Dementia programme’ International Journal of Geriatric Psychiatry 32: 68-75.
3 Daley, S. and Grosvenor, W. 2016. Integrating dementia care into undergraduate nurse curricula London: Nursing Times Online: www.
nursingtimes.net/careengland/integrating-dementia- care-into-undergraduate-nurse-curricula/7009643 Last accessed 21 August 2019.
4 Grosvenor, W., Hebditch, M., Daley, S., Vyvyan, E., Banerjee, S. 2017.
‘Time for Dementia: an innovation in education’ Journal of Paramedic Practice 9(11).
5 Bickford, B., Daley, S., Sleater, G., Hebditch, M., Banerjee, S. 2019.
‘Understanding compassion for people with dementia in medical and nursing students’ BMC Education 19:35.
6 Cashin, Z., Daley, S., Hebditch, M., Hughes, L., Banerjee, S. 2018.
‘Involving people with dementia and their carers in dementia education for undergraduate healthcare professionals: a qualitative study of motivation to participate and experience’ International Psychogeriatrics (6):869-876.
7 Banerjee, S. 2014. ‘Multimorbidity—older adults need health care that can count past one’ The Lancet. S0140-6736(14)61596-8.
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ATTITUDES TO DEMENTIA
5.2 Dementia research participation; challenging stigma
Contributor: Howard Gordon. Dementia Alliance International, 3 Nations Working Group
As a person living with dementia, it was important to be able to include the voice and experience of someone living with this condition in Alzheimer’s Disease International’s world report 2019. I am grateful for the opportunity to comment on the role of research and research participation, attitudes and stigma.
On 10th May 2019, I took part in the Alzheimer’s Disease International webinar “Let’s Talk Dementia Research:
Maintaining hope when trials end” where we discussed the importance of researchers seeing people living with dementia as partners in research rather than participants.
People living with dementia no longer want research done for them or for others to decide what research should be undertaken.
A new Project in the UK called “Dementia Enquirers”, facilitated by DEEP (Dementia Engagement and Empowerment Project) aims to put people living with dementia in the driving seat of research, showing that we can design, develop, run, report and publish research, with academics and professionals as advisors not participants.
In the last 18 months, I have taken part in over 20 research studies, one a clinical trial lasting 12 months, some as simple as a questionnaire.
On the positive side, research engages people living with dementia, giving them a purpose and whilst we understand that research may not benefit us, we do it
for others, for our children, grandchildren and those that follow.
On the negative side, once research is completed, we rarely hear anymore, we may feel discarded like an old shoe or worse, we may find out that a particular study has finished early, devaluing our self-worth.
One of the greatest challenges people face following a diagnosis of dementia is stigma, which manifests itself in many ways.
The broad use of terms such as “suffering” perpetuate the misconceptions and stigma of living with a diagnosis of dementia.
Language is hugely important and changing words is important. We all suffer at times, but with increasing numbers of people being diagnosed, as young as 2 years old, it is important to differentiate the experiences of people living with dementia at different stages and abilities, while acknowledging that some, especially in the palliative stage, may feel they are suffering.
Use of the term “palliative stage” instead of “end stage”, may reinforce the view that we are entitled to palliative care, not to be written off, and in a recent document there was a question asking about our “opinions” which is now going to be changed to the word “choices”. A simple but powerful change.
We may still be working and driving, often we are told we have to stop at diagnosis, but may be able to continue to do so, depending on our abilities at that time.
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Stigma can strip us of our personhood, belief in our own ability, to continue as we were the day before the diagnosis, leaving us with a feeling of failure, of disablement, leading us to take on the role that stigma lays out for us.
I was relieved to get the diagnosis as it put a label on what had been happening to me but the perceptions and stigma, based on working in healthcare for nearly 20 years, and on those often portrayed in media, that I carried into my neurologist’s office, would have a negative, disabling effect on me during the next 12 months.