Leeds GATE

Working to improve the quality of life for Gypsies and Travellers

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Dementia in Gypsy and Traveller communities

Helen Jones's picture
By Helen Jones |  September 7, 2015 |

Dr. Mary Tilki working with Leeds GATE
Dr. Mary Tilki is working with Leeds GATE raising awareness and understanding of dementia

By Dr Mary Tilki

Although dementia is generally understood as an older age-related condition, and, Gypsies and Travellers generally have a very low life expectancy, there is growing evidence of dementia in these communities.  Gypsies and Travellers (referred to here as Travellers for brevity) are known to experience extremely poor health. The nature of these illnesses such as cardio-vascular disease, depression and anxiety has the potential to increase the risk of dementia.  Social factors related to the living conditions and experience of travelling people add to these risks and make it more difficult for people with memory loss to cope with the condition.  Similarly these matters impact on the ability of family and community to cope, although their willingness to do so is strong.

While there is a slowly growing interest and increasing research on the health of Travellers there is as yet limited consideration of dementia.  Dementia is discussed widely now in the UK but there is limited attention to minority ethnic groups, particularly Travellers.  Although research suggests low levels of dementia among Travellers, it may be that because memory loss is seen as part of ageing, people are not engaging with GPs or when they do are not being diagnosed.  There is evidence of high levels of cardio-vascular disease, hypertension and diabetes among Travellers and these have the potential to increase the risk of dementia.  There is also growing evidence from community organisations of dementia at earlier ages in Travellers in the UK.

Learning to cope is a struggle for every person with dementia and their families but the problems are magnified for Travellers.   Traveller families expect to care and do so willingly, not seeing themselves as caregivers but as family doing what families are supposed to do.  Most of the caring relies on women, and, although family members rally round, there is invariably one person who undertakes most of the caring.  Travelling circumstances, literacy and the failure to target information at Traveller groups mean less access to information and therefore a lack of knowledge about dementia.  Carers assume that forgetfulness and confusion are normal parts of ageing and that nothing can be done to help.   People with memory loss often conceal the problem and relatives may be embarrassed to talk about what is seen as a mental health issue outside the family or community.  Norms of respect among Travellers may make them reluctant to talk to an (older) person or to take action which they think their loved one would dislike.

The shortage of decent Traveller sites, public and local authority response to mobile groups, are problems for people with dementia and those who care for them.  The inadequacy of services on a site makes helping the person with dementia with hygiene, toilet or additional laundry difficult.   Those used to being on the move are at risk of wandering and getting lost and keeping a person with dementia safe is an added difficulty on a trailer site.  Older Travellers with disability feel forced to move into housing, which impacts negatively on their health and that of their carers.   Relatives obliged to give up their travelling lifestyle to support someone with dementia can be isolated from family, community and their traditional way of life.   Men used to an outdoor life can feel caged in, missing contact with animals, green spaces and freedom to roam.

There is a culture of pride and self-reliance in Traveller communities and they aim to cope with problems within the family.  Being in control is important and Travellers are reluctant to be a burden to anybody.  However, alongside their wish to be independence, the Travelling community needs information about dementia and help for those caring for loved ones with memory loss.  These must be culturally appropriate and enable the family to care in ways which are meaningful for them and which respect Traveller ways.

Leeds GATE, Irish in Britain and the residents of Cottingley Springs are working together to improve dementia awareness in Travelling communities, to identify what a dementia friendly environment or culturally sensitive dementia care means for Travellers.

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