Dementia within African Caribbean communities

AC1Dr Julia Botsford, Research and Evaluation Admiral Nurse, specialises in dementia within Black, Asian, and Minority Ethnic communities and has shared valuable information (specifically for African Caribbean families) and tips for managing culture and dementia. 

Health Education England recently released two short films – ‘Finding Patience’ and ‘Finding Patience – The Later Years’ – which Dementia UK and other organisations were involved in as advisors. Both films feature African Caribbean actors and are set within the context of an African Caribbean family living in the UK. ‘Finding Patience’ covers the period leading up to getting a dementia diagnosis and ‘Finding Patience – The Later Years’ is set much later, when Patience has moved into a care home.

Growing evidence suggests that there is a real stigma around dementia in some minority ethnic communities. This can mean that people may find it hard to ask for help or even to talk to others about it. These new films offer a very welcome depiction of how a family grapples with the changes associated with the early signs of dementia. The second film also shows the importance of knowing the individual and their background when providing care in a care home setting. Both films are being used to promote awareness of dementia within African Caribbean communities, as well as being a useful training tool for those working with African Caribbean families living with dementia, especially in the care home setting.

Studies have found that African Caribbean people may be more prone to cardiovascular disease, hypertension and diabetes, which are all risk factors for developing vascular dementia. However, it seems that African Caribbean families tend to approach their GP or other health services later than people from other ethnic backgrounds about the early signs of dementia. This means that they may not receive an early diagnosis, and often present when the dementia is quite advanced or when there is a crisis.

The following tips are offered to anyone concerned about themselves or anyone they know who is affected by dementia, but are of particular relevance to people who are from an African Caribbean background:

Tips on culture and dementia

  • Cultural background is an important part of what makes us who we are, but everyone is a unique individual. It is important that the professionals who support you or your family member understand your needs as much as possible, so that they can help you in the most appropriate ways. Do consider sharing with professionals any relevant background information about yourself/the person you care for. For example, if the person with dementia spent their early years in a different country or experienced hardships in the past.
  • Do let professionals know about any particular needs; for example, around observing your faith if this is important to you or the person with dementia or particular needs around hair and skin care, or diet.
  • Reminiscence and having meaningful activities are important for everyone, but especially in the case of people with dementia who may be in a place far from where they were born and brought up. Is there any particular music that your relative enjoys or which remind them of the past? Are there any photographs or other objects which would be meaningful for them?
  • If the person with dementia needs increased support and you are considering a care home think about how the home would be able to address their cultural needs. There are lots of issues to think about when choosing the best home, but do think about how comfortable the person would be in relation to the cultural mix in the new home – are there other African Caribbean residents in the home or not?
  • In some locations there are culturally specific services available. This varies from region to region, but you can ask your local social services about what is available in your area, or look on the internet. You may know other people who have accessed services locally so they would also be a source of advice.

Tips on health to reduce dementia risk

  • Take exercise – think ‘if it’s good for the heart, it’s good for the brain’. Try walking, dancing, gardening, and doing the housework, ideally 30 minutes at least five times a week.
  • Eat a healthy diet – cut down on salt and avoid fatty foods. Eat a wide variety of foods including plenty of fresh fruit and vegetables.
  • Control your weight – being very overweight increases the risk of dementia and is also associated with diabetes, which is also linked with increased risk of dementia. It is important to keep diabetes well-controlled.
  • Monitor your blood pressure – high blood pressure is associated with the risk of strokes and vascular dementia. Get regular checks, and if necessary take prescribed medication and/or follow medical advice about diet and activities.

What to do if you’re worried about yourself or someone you know

  •  Talk to someone – don’t worry on your own. Maybe you know someone who has had similar concerns or maybe there is someone you trust; for example, someone in your local church or a member of a community group you are involved with.
  • Make an appointment to see the doctor and talk it through. If you wish, bring along a friend or someone you feel comfortable with.
  • Other (often reversible) conditions may be behind the changes you are noticing so it is important to get a proper diagnosis with your doctor.
  • If necessary, the doctor can screen for other conditions or refer on to a specialist team for further assessment and investigations.
  • Even if it turns out that it is a form of dementia it can be helpful to find out as soon as possible, in order to be able to understand what is happening, get support and to be able to organise and plan for the future.