MY DEAR MOTHER LIVES WITH DEMENTIA

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Morejoy Saineti...tackling dementia

Morejoy Saineti, consultant specialist nurse, reflects on the personal reason that prompted her to dedicate her life to researching the debilitating brain disease

DEMENTIA is probably one of the most pervasive brain diseases known to mankind. For me personally, having witnessed the debilitating power of this condition on my own mother, I reckon that the most appalling thing about dementia is the manner in which it robs its victims of their most treasured possessions; individuality and personal dignity.

When I was growing up in Zimbabwe my mother was a school teacher. She was  immensely dedicated to her job despite the fact that her salary left much to be desired and she also had to juggle career and caring for me and my seven siblings.

Sadly, the colourful memories I treasure of mother In her prime as an active, alert and diligent woman are so far removed from her new personality I might as well be comparing chalk and cheese.

Indeed, the experience of watching mother’s mental deterioration over the years has been akin to seeing a bright light fading away, slowly, until there is complete darkness. Nevertheless, this painful experience has been pivotal to my determination to understand dementia in all its manifestations.

It transpires that mother’s dementia originated from HIV infection. My dad died of the virus in 1994 and since then the journey with my mom has been awesome. It helps greatly that mother is a woman of faith and a resilient one at that. Four months ago, she had a stroke. But fortunately, she came out of hospital fully recovered from it.

My entry point into serious academic research on dementia started after I migrated to the UK to do an MSc in Health Research. By then I already had extensive nursing experience in managing tuberculosis, HIV counselling, community psychiatric nursing and crisis intervention in mental health.

I completed my MSc in Health Research in 2004 whilst working for Oxleas NHS Foundation Trust in several departments as a Charge nurse and Nurse manager.

I then moved to the London borough of Westminster where I pioneered a community dementia palliative care service whilst working for Housing and 21. The project was very successful and I was awarded the Dementia Nurse of the year in 2010 by Stirling University and the Royal College of Nursing. That year I was also runner up in the Public Servant of the year awarded by the Guardian.

In 2013 I was given a Queen’s Nurse title which advocates and honours quality care in community nursing.

Whilst working on that project, I also developed training materials for both health professionals and the public. I was later told that the service had saved the National Health Service around £250,000 a year (in its first years of inception) before being rolled out to other parts of the UK.

But it was while I was engaged in the steering committee for Department of Health Education England that I started to develop training modules on dementia to a professional level.

I am currently working as a visiting lecturer at Greenwich University, where I teach undergraduate and postgraduate students about Dementia, Organic Brain Disorders, and end of life care. I am also an international conference speaker having recently presented sessions at ICASA Zimbabwe (2015).

My work on dementia in the UK caught the attention of the mainstream media in 2010 when the BBC, Channel 4 and London News, all featured my Dementia Voice Nurse project in Westminster in November 2010.

I was subsequently featured on BEN TV in 2014 and Voice newspaper whilst carrying out a dementia awareness campaign in ethnic minority communities within the UK. Currently, I oversee Regeneration Centre International, a Christian charitable organisation that  is developing links with VOAC (voice of African child) to support orphans of HIV in deprived countries.

While I am proud of the awards, recognition and acclaim for my involvement in dementia I am also concerned about the lack of adequate support for people living with dementia. Given that HIV dementia or vascular dementia due to strokes are now a recognised variant of the disease, there is, in my opinion, an astonishing lack of urgency to connect the dots or tackle serious funding issues head on.

There is no doubt that tremendous efforts have been made over the past two decades or so, in the treatment of HIV. However, the other side of the coin is that people who are not seeking HIV treatment early are more prone to HIV dementia.

One of my ambitions is to put the knowledge and experience I have gained in my work on dementia in the UK, to good effect in Africa. I’m appalled by the fact that in many countries on the continent people with dementia are demonised, isolated, or worse still labelled as witches.

And when I hear that thousands of dementia sufferers in Africa end up in the hands of traditional healers or faith healers, where they can be exposed to all kinds of abuse and ill treatment, I am grateful that my mother has not suffered the same fate.

I would like to start by developing a dementia training centre in Zimbabwe so that I can share what I have learnt over the years with others. Once the Zimbabwe centre is up and running, I envisage setting up similar projects in other African countries.

I intend to start by setting up an information service which will convey information about dementia in local languages so that ordinary people can have a basic understanding of this debilitating condition.

As I write this article, I am making preparations to travel to Zimbabwe to sign a Memorandum of Understanding with the ministry of health to set up my “charity begins at home project,” so to speak!

  • Morejoy Saineti is keen to connect with potential donors or funders for her dementia project. She can be contacted on her email: mjsaineti@gmail.com

 

 

 

 

 

14 COMMENTS

  1. Well written and explained, I did not know much about dementia before, but after reading this article my eyes have been oppened. It’s a noble cause you have embarked on and the lack of dementia awareness in our society makes it hard to appreciate the role we can play in supporting the victims. In Zimbabwe the usual response is to laugh at the affected people and just say “vakukanganwa zvekuti mazuva ano”. It’s a great job you have started and have no doubt you will be financially supported as well. You should also considet starting a Gofund page.

  2. Wow!!! Zimbabwe really need this. A lot of elderly people are being misunderstood and/or abused by their families because of a lack of knowledge, especially in the rural areas. If information about the condition can be translated into different languages that will be so helpful. Our elderly who worked so hard for us deserve to be loved and taken good care of till the end. All the best on this great project you are embarking on and i pray you get all the financial support you need. Like the previous comment i think a gofund page is a great idea.

  3. Well written indeed. It is assuring to know that we have heroines like you who are willing to set a good example on our future generations by enlightening the Zimbabwean nation of this dreadful illness. “charity begins at home” well practised there. Well done and may the Lord keep empowering you

    • Thank you. We will keep pressing in till we reach the whole of Africa with the Dementia message.

  4. Wow! Thank you so much for highlighting that there is HIV dementia. We desperately need such education in Zimbabwe to help care for our loved ones so that they do not get stigmatised and taken to “Sangomas”

    I pray that the wisdom of God will continually be upon you as you embark on this awesome journey. Charity definitely begins at home.

  5. Thank you for your support and prayers. We need to join our hands and support people living with dementia.

  6. Thank you so much for using your experience to give an insight about dementia. I pray that the government of Zimbabwe and the people of Zimbabwe will support your ideas.

  7. Hi. Having read about your journey and being a close relative to a person with dementia, I really appreciate the great work you are doing. Dementia is affecting a lot of people and I don’t think the general public is being informed adequately about this disease, especially in third world countries. Keep up the good work!!!

  8. Hi Antony
    Thank you for your comment. I feel blessed that I have some knowledge about dementia and I am able to help my mom. However, I feel I should help others in a similar predicament so that they can help their loved ones to live as well as they can with dementia.

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