Written by Asma Pandor, Admiral Nurse at Gloucestershire Hospitals NHS Foundation Trust. Dementia UK develops, trains and supports her in this role.
We know that families with cultural and religious needs can under-access dementia services due to stigma and services not adopting inclusive approaches to care. Professionals have a key role to play to ensure families are supported through their unique challenges and 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.
2. Understand different socioeconomic barriers individuals may face when accessing care
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.
3. Provide services in different languages
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.
The films above 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.
4. Understand that a family’s culture impacts their choices regarding ethical issues
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.
5. Understanding the individual needs of the communities supported
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.
Cultural and religious awareness within dementia care
Admiral Nurse Asma Pandor discusses the importance of cultural and religious awareness within dementia care for ethnic minorities
Dr Julia Botsford is a specialist in the area of dementia in ethnic minority communities. We talked to her about the questions and issues that cultural and ethnic differences can raise in the provision of support and the creation of services for those living with dementia and their families