At Women in Healthcare UK, we celebrate strong, inspiring and unsung heroic women all over the world. One of these women in Morejoy Saineti, the founder of ‘Africa Dementia Service’.
Morejoy is a dementia consultant specialist nurse with 34 years of experience as an RGN and RMN, both in the UK and overseas. Her extensive experience covers a plethora of areas, including managing TB, HIV counseling, crisis intervention and dementia care. She is currently a visiting lecturer at Greenwich University, teaching students about dementia and organic brain disorders.
She is passionate about being the voice of the voiceless and this passion is transferred to her commitment to delivering quality care for patients, families and the whole community.
We were lucky enough to be able to interview this incredibly inspiring woman who has caught the attention of the BBC, Channel 4 and London News.
What drove you to set up the Africa Dementia Service?
I got the passion of setting up ADS from the experience I got as a family carer fighting for treatments for my mom who was being denied until she developed dementia to the extent of the advanced stage. I lived with my mom during that critical stage of the condition. I fought until she got the treatments of the virus which was damaging her brain cells. I learnt from that experience how other people in Africa and those living as ethnic minority living in developing countries are ignorant of Dementia and its devastation if the distress is not dealt with. I then was involved in piloting a project (Dementia Palliative care service) in Westminster Borough of London which was very successful and was bench marked for other parts of the countries. This led me to study about pain and dementia, a concept many are not aware. From informal discussions with friends and colleagues I discovered how challenging it was for people in Diaspora to fend and monitor the care for their parents/ relatives back in their original countries. The people with dementia are neglected and demonised same are labelled witches or mad. When I visited my aunt in the villages in Zimbabwe who was presenting with Parkinson like symptoms of shaking it made me to realise how urgent this initiative was… just to give people an awareness of these neurological conditions and to demystify them. She was abandoned in the care of a small village boy.
From the feedback I got at my two workshops I held at ICASA 2015 in Zimbabwe (International Conference on AIDS/HIV and STIs Africa), not much is happening in Africa in terms of dealing with dementia yet many have cardiovascular conditions, HIV, Alcohol problems, Diabetes, all and other conditions which can complicate to dementia. This lit me fire in me. Also as a person of faith, I also begun awareness to the churches and people of faith.
We are very sorry to hear that your mother suffers with Dementia, do you know what the cause was?
Let me correct you and say my mom is living with dementia. The point of suffering was eliminated when we dealt with pain and distress and when the family got to know about dementia and how to interact with mom. My mom contracted HIV which was diagnosed here in UK in 2005. My dad died in 1994 of the condition. All along she was quite health but the virus took its toll in her old age. Now with the support she is getting from home my mom’s condition has tremendously improved. She is a woman of faith and that has also helped her. She is now walking, from being in a wheelchair and having a continuous care full package of 2 carers 4 times a day, she is living with my sister family without carers.
What is it like to see your mother suffer with dementia?
Seeing mom suffering was devastating. It was a hopeless situation when as a nurse at that time I felt helpless as she was being denied treatment. I could not return her home in her frailty. She was a visitor here. During that time the health situation was poor in Zimbabwe. All her daughters and their families are nurses here. there is no one who could look after her at home. It was difficult. I had to look for help and I saw a poster in the HIV clinic about an organisation called AHEAD which helped me to apply for mom to be finally treated after almost a year of suffering and deteriorating to severe dementia and depression. She also had hypertension and congestive failure.
Obviously, it is difficult to watch anyone suffer with dementia, however, what makes it harder in Africa?
What makes it hard in Africa:
- A lack of knowledge, skepticism
- A lack of resources/ misappropriation of money which could be used to develop these services
- A lack of government support and policies which protect these vulnerable people poverty and diseases
- The elderly who were left looking after HIV orphans are now living with dementia in old age and no one is now looking after them.
- Cultures which believe that there is no dementia in Africa
- Cultures which easily demonise conditions they do not understand
- Labels like witches are used and people are isolated or stoned to death in other countries.
Why do these attitudes towards Dementia exist in Africa?
A lack of knowledge, policies and strong organisations to advocate.
What is the Africa Dementia Service?
ADS is an initiative to set up services in Africa to give awareness, training, research and support to deal with dementia and conditions surrounding it. It has started with Zimbabwe but aims to spread across Africa. Being in UK has made it easy for us in terms of associations. We are in contact with people from different countries of Africa and so the concept can quickly spread.
What are your hopes for the future, both for your service and for the world in relation to Dementia awareness?
Africa Dementia Centers of excellence, Bespoke Research and training centers, Africa Dementia villages, The world should become dementia friendly to eradicate the pain and distress which is caused by ignorance.
Morejoy funds ADS with her own money. This is something that needs to change so that she can extend her wonderful services and help more people by eradicating the pain and distress caused by ignorance.
Can you help?
Contact us today at firstname.lastname@example.org to let us know how you can help this incredible service not only continue, but reach more people.