Admiral Nurse Asma lists 5 steps from her own practice on how professionals can support families with religious and cultural needs
Everyone should be treated with respect, kindness, dignity, compassion, understanding, courtesy and honesty. Privacy and confidentiality should be maintained at all times. All professionals should introduce themselves at every meeting. Every effort should be made to understand the condition and how it may be affecting the individual.
There are relatively low levels of dementia awareness among ethnic minority communities in general. This means that early symptoms may not be recognised or people may dismiss them as inevitable signs of old age rather than seek support or a diagnosis.
Dementia is highly stigmatised in many minority communities, so people from ethnic minorities are even less likely to be diagnosed and access mainstream services than others. There is no specific word for dementia in most South Asian languages, for example.
There may be ways to engage people from a particular community if they are not coming forward to use services that could benefit them. One very helpful approach is to make links with community leaders, faith groups or ethnic centres in the neighbouring area, if possible working in partnership with them to reach people who may be struggling without appropriate support. It is imperative to ask everyone what ethnicity they would belong to and not to make any generalisations or assumptions.
Consideration should be taken around the language used when conversing with people about dementia, especially to individuals who may have limited knowledge around dementia or consider it a taboo subject.
Where possible, opportunities should be seized to dispel myths about dementia such as: symptoms are an inevitable part of growing old or are due to possession by devils or spirits, or a punishment for wrongdoing earlier in life. This might come in to play when talking with the family member of a person with dementia, or when opportunities arise to give formal talks in local community centres.
These films provide information about the signs and symptoms of dementia and direct people to local help and support services. The films also seek to address some of the stigma and misunderstanding that exists about dementia within various communities. These films were funded by Gloucestershire County Council’s Dementia Education and Training Strategy and Gloucestershire Health and Care NHS Foundation Trust.
There are frequently deeply held cultural attitudes towards roles in the family. Adult children are often expected to act as carers for older relatives, with women especially being expected to provide the practical aspects of care. Seeing caring as part of a normal family role may mean that people do not recognise themselves as “carers” and therefore they may not take up services targeted and promoted as being for carers. Some individuals from ethnic minority communities would prefer to access services run by and for their own community. Others may find it difficult to access these because of the stigma or other personal preferences about being in a more multicultural environment.
It is useful, on an organisational level, to keep records around equality and diversity and ascertain whether people using services reflect the local population. It is imperative to sensitively ask people which ethnicity they belong to and not to make any assumptions. Holding open and honest conversations around the needs of the communities is essential to developing inclusive services.
Two years ago, Dementia UK partnered with the Chinese Welfare Trust to launch a new dementia specialist Admiral Nurse clinic to support Chinese and South-East Asian families. Admiral Nurse Emily Ka-Hei Lui reflects on the pilot service and its early achievements.
Thea Sobers is a Research Assistant at Dementia UK. Her past work has focused on overcoming barriers to dementia support for Black, African and Caribbean communities.
Hannah Gardner, Consultant Admiral Nurse for Children and Young People, shares tips on how young dementia carers can look after themselves during the holidays.
