Rochdale dementia activist and author features on BBC documentary

A Rochdale campaigner for dementia awareness featured on the second episode of BBC’s recent Ed Balls documentary, Inside the Care Crisis.

The two-part documentary sees the former shadow chancellor and MP explore the crisis in the care sector, immersing himself in a care home before entering the world of paid and unpaid home care.

Ed met with Shahid Mohammed, of Rochdale, who recently wrote a book addressing dementia in BAME communities (Black, Asian, Minority Ethnic), to see how the crisis has affected ethnic minorities, who are less likely to seek help from social care.
 

Read more: Books about dementia launched for BAME communitiesPublished: 28 August 2021

After his mum, Hajra, was diagnosed with vascular dementia, Shahid gave up his professional career to become her full-time carer, alongside his wife. A mother of five with 17 grandchildren and three great-grandchildren, Hajra’s health deteriorated and she experienced a change in her personality due to the illness.

Hajra died in 2015 at the age of 81, surrounded by her family. Shahid adds they had “amazing support” from Springhill Hospice’s ‘Hospice at Home’ nurses.

Shahid said he was asked to take part in the documentary after initially being involved behind the scenes as a consultant to the producers.

He explained: “I wanted to shine a light on the 'fragmented pathway' to dementia services as it affects BAME communities and families much more; but also, to empower family carers so they can ask for help when they need it – not just at crisis point.”

For many years, Shahid has campaigned to raise awareness of dementia and empower BAME dementia carers and those living with dementia so that they have an “equal and equitable” voice and to ensure dementia services are inclusive and reflect diverse communities and their needs.

He said: “There is an expectation and duty that we should look after our own, like mum. Our religion, and faith leaders give permission for families to seek help and support, in this case from social care, so that we are better able to take care of our elders.”

 

 

Now a project manager with national dementia carers’ charity Tide Carers, Shahid explained that in many South Asian communities, there is no word for the illness, with people associating it with mental health.

Indeed, there is no word for dementia in most non-English languages. This causes the condition to be seen as related to old age or poor mental health, or even possession by spirits or ‘black magic’ in some faiths and cultures.

In reality, dementia results from physical changes in the brain and is the name for a group of symptoms that commonly include problems with memory, thinking, problem solving, language and perception. In a person with dementia, these symptoms are bad enough to affect daily life.

Shahid said: “Because there is no word for dementia in many south Asian languages and due to the lack of awareness of the condition, people often use the word ‘pagal’, which means crazy - and due to the stigma related to dementia, we know many families can end up suffering in silence.

“When my mum was diagnosed with vascular dementia, I wasn’t sure what that meant or the effect the diagnosis would have on all us as a family. So, I began gaining knowledge of the disease to care for her better, and started raising awareness in the community and delivering lectures at universities and to Rochdale GMP. I gave a pledge to mum to spend my life doing it to make sure other families don’t go through what we did.”

Shahid wants the government and local services to invest now in BAME health care needs, as it will not only be a saving in the future but will meet the current and projected needs. 

Dementia amongst BAME communities is expected to rise seven to eight-fold in the next three decades, according to the All-Party Parliamentary Group on Dementia – and they often present late for help and support, or not at all.

This too is touched upon in the documentary as ethnic minorities make up just 3% of care home residents, with many care homes lacking cultural adaptations – such as meeting religious and cultural needs, and accommodating the individuals’ dietary requirements, including providing halal food.

After Hajra’s death, Shahid vowed to get help from the social care sector, rallying local Imams for support – with tangible results such as sermons being delivered about dementia, which is mentioned in verses of the holy Qur’an that also relate to old age.

The documentary sees Shahid and Ed chat to members at a local mosque after one such sermon, with one attendee saying it was “music to his ears” as the community “needs to be educated” about dementia.

Shahid added: “This is my mum’s legacy; I hope she’s proud.”

Shahid also hopes to work alongside local care homes and religious organisations to ensure they are suitable for people from diverse backgrounds.

Inside the Care Crisis is available to watch on BBC iPlayer for another 11 months.