Walking Through The Change Together: Tackling the Stigma Around Dementia in the Chinese Community

By Emily Ka-Hei Lui, Clinics Admiral Nurse at Dementia UK (www.dementiauk.org)

We have a common saying in Chinese culture: Bad things that happen in the family, stay in the family. In our community, a diagnosis of dementia is often swept under the carpet due to shame.

Having grown up in Hong Kong and in a Chinese family, I’m all too familiar with this attitude.

Five years ago, I started noticing changes in my grandma’s behaviour. She would buy the same shopping items repeatedly and the kitchen would be bursting with crockery and utensils. We figured her forgetfulness was just a natural part of getting older.

It wasn’t until she was admitted to hospital with hyperglycaemia (high blood sugar) that we got the full picture of what she had been going through.

Grandma had been overeating all hours of the day and throughout the night. She was confused and forgetful because she was experiencing trouble with her memory. We weren’t aware of just how much she was struggling, and it was probably because she didn’t want the family to worry about her. She was diagnosed with dementia and this was just the beginning of her journey.

Little did I know that I would end up supporting families living with dementia in Hong Kong at a community health centre. I’ve brought this experience to the UK to work as a Clinics Admiral Nurse at charity Dementia UK. I’m delivering a first-of-its-kind Clinics service for families with dementia from the London Chinese communities in partnership with the Chinese Welfare Trust.

As I can speak Cantonese and Mandarin fluently, I communicate with families from this community and provide tailored clinical advice and emotional support.

It is estimated that there are more than 25,000 people currently living with dementia from Black, Asian, and minority ethnic groups, which includes the Chinese community in England and Wales.1 This is expected to exceed 172,000 people by 2051.

Research suggests people from ethnic minorities, including those from the Chinese community, often face delays in getting a dementia diagnosis and barriers to accessing services.1

In Chinese culture, there is a real stigma surrounding dementia. It is quite common for a family member to receive a diagnosis of dementia or suspect a diagnosis, and to keep it a secret from the family. In some cases, the family may hide it from others due to the shame surrounding the condition.

The traditional term to describe a person with dementia translates as ‘silly’ or ‘dumb’ in Mandarin and Cantonese. In many Chinese-speaking societies, the term has been replaced with a more neutral word to remove this stigma and adopt a kinder approach, but there is more progress to be made. Dementia UK’s Admiral Nurse Clinics Service along with the Chinese Welfare Trust, has adopted this modern term to empower families from the community.

It is even more common for symptoms of dementia including forgetfulness, to be considered a ‘normal’ part of aging — which means some people never get a formal diagnosis. Many families in the community do not receive vital information about dementia, including information on signs and symptoms, and diagnostic and post-diagnostic services.2 This is largely due to difficulties in navigating health services as a result of language barriers, lack of information, and access problems.

According to research findings, there is a strong sentiment in the Chinese community around both needing and wanting professional medical support, but being reluctant to seek it, if it comes at the cost of being ‘diminished’ as a person.3 This is either through shame in the family or through the navigation of the health and social care system.

Death is considered a taboo subject in Chinese culture and is not spoken about openly. This can cause huge challenges when it comes to arranging end-of-life care. Following a diagnosis of dementia, it is vital that the person can discuss and organise care plans while they still have the capacity and cognitive abilities to make decisions regarding their future.

Moreover, in our culture, younger members of the family are often expected to look after their elderly relatives. This dynamic can place additional stress and burden on young carers and cause friction in families around caring responsibilities. It is not uncommon for families in the Chinese community to look to health and social care professionals to mediate these conversations around care. As an Admiral Nurse, working with the whole family to manage complex needs is central to my day-to-day work.

My role as a Clinics Admiral Nurse, has spurred me to share my knowledge of Chinese cultural practices, beliefs and values with colleagues, so that we continue to work towards tackling existing inequalities in dementia care.

This is even more important as dementia is a huge and growing health crisis; the estimated number of people living with the condition in the UK is 944,000. This number is set to increase to 1.1m by 2030. Almost all of us will know someone affected, whether it’s a family member or a friend. But there simply aren’t enough Admiral Nurses to reach every family that needs support. With gaps in health and social care services, barriers that the Chinese community face to accessing support, and the stigma around dementia, it is vital that we begin to educate and raise awareness among health and social care professionals, so they can begin to address these issues.

Information about dementia and the services available need to be easily accessible and translated into different languages so that we reach these families and break down the stigma which leads to isolation. Delivering personalised care is also critical. Getting to know not only the person with dementia, but their whole family can enable healthcare professionals to better understand cultural attitudes and how they intertwine with care needs. This might involve broaching conversations around end-of-life care with sensitivity or providing a space for families to share concerns around caring responsibilities and expectations. For now, Admiral Nurses like me with the support of Dementia UK, are uniquely placed to provide life-changing guidance and inspire change within the dementia care system.

My grandma remains at the forefront of my mind every day. No person or family should have to face a diagnosis of dementia alone; we should walk through the change together and tackle the stigma around dementia in the Chinese community so that all families get the support they need.
Dementia UK’s Admiral Nurse Clinics service in partnership with the Chinese Welfare Trust is available to families residing in, registered with a GP, or who are a member of one of the Chinese Welfare Trust’s local community partners in the London boroughs of Barnet, Brent, Camden, Tower Hamlets and Westminster. To find out if you meet the referral criteria for the Chinese Welfare Trust Admiral Nurse clinic, please call 020 3870 9350 or email CWTANclinic@dementiauk.org   

To find out more about becoming an Admiral Nurse, speak to the team at Dementia UK by emailing admiralnurserecruitment@dementiauk.org or for more information, visit https://www.dementiauk.org/for-professionals/admiral-nurse-careers/

References
1 https://www.alzheimers.org.uk/for-researchers/black-asian-and-minority-ethnic-communities-and-dementia-research
2 https://raceequalityfoundation.org.uk/wp-content/uploads/2018/03/health-brief10.pdf
3 Baghirathan, S., Cheston, R., Hui, R., Chacon, A., Shears, P. and Currie, K. (2018). A grounded theory analysis of the experiences of carers for people living with dementia from three BAME communities: Balancing the need for support against fears of being diminished. Dementia, p.147130121880471. doi:10.1177/1471301218804714