Dementia in Gypsy and Traveller communities
Dementia Among Gypsies and Travellers : A growing concern
Although Gypsies and Travellers have low life expectancy, there is growing evidence of dementia in these communities. They experience extremely poor health, much of increases the risk of dementia. The lifestyle and experience of Travellers * increase risk and make it difficult for people with dementia and their families to cope (Tilki et al 2016a) .
Traveller health is worse than that of the general population or non-Travellers in deprived areas (Parry et al 2007, Ryan et al 2014) with excesses of cardiovascular disease and diabetes (European Union 2014). Chronic physical and mental illness exacerbates social isolation and increases the risk of dementia.
Despite this Travellers have difficulty accessing health services (van Cleemput 2012, Tilki et al 2016b). Travelling lifestyles or inability to register with a GP leads many Travellers to A&E (KMPHO 2014). Literacy is a barrier, precluding those who can’t read information or use online resources. Discrimination breeds mistrust of officialdom and previous insensitive encounters with health professionals make Travellers reluctant to seek help. However when a GP, health visitor or midwife is trusted, Travellers will return from travelling to consult them (KMPHO 2014). These barriers are exacerbated for people who develop dementia and impact disproportionately on family carers.
Dementia in Gypsy and Traveller communities
There is increasing research on the health of Travellers in the UK but limited consideration of dementia (Truswell 2013). Community organisations suggest that ignorance about dementia and seeing forgetfulness as normal ageing contribute to invisibility but Travellers are presenting with dementia at earlier ages than would be expected (LeedsGATE 2015).
The difficulties of caring for a relative with dementia are magnified for Travellers for practical and cultural reasons. Travellers do not see themselves as carers (APPG 2013, MEECOPP 2012) but as families doing what families do. Carers are embarrassed to talk about this outside the family, for fear the person may be taken away to a home. Equally they are frightened to talk about dementia in case they reduce the ability of the person to cope with the condition.
The shortage of adequate traveller sites (KMPHO 2014) increases the stress of people caring for somebody with dementia. Inadequate facilities make hygiene, toilet use or additional laundry more difficult. Travellers used to being on the move risk wandering off the site and getting lost. Keeping a confused person safe in a place where metal is stored for recycling poses an added difficulty.
Travellers with increasing disability feel forced to move into housing and carers who have to curtail travelling to support a relative with dementia become isolated from family, community and traditional ways. Men used to an outdoor life feel caged in, missing contact with animals, green spaces and freedom to roam. As memory deteriorates, people with dementia may become agitated recalling memories of forced eviction, discrimination and even imprisonment.
Reluctance to seek external help can be out of respect for the person with dementia or more likely the culturally insensitive services on offer. The mistrust of non-Travellers and health professionals play a part in Travellers often only seeking help in a crisis. However, this does not mean that families will not accept help if it is negotiated by a trusted professional and offers care which respects Traveller ways (MEECOPP 2012).
* for brevity the term Travellers is used to include Gypsies, Roma and others
Mary has been involved in the DAA's campaign, From Seldom Heard to Seen and Heard.
The DAA Secretariat has recently been made aware of the Friends Families and Travellers charity.
APPG on Dementia (2013) Dementia does not discriminate: the experiences of Black, Asian and Minority Ethnic communities. House of Commons All Party Parliamentary Group on Dementia
European Union (2014) Report on the health status of the Roma population in the EU and the monitoring of data collection in the area of Roma health in the Member States. European Commission. http://ec.europa.eu/chafea/documents/health/roma-health-report-executive-summary-2014_en.pdf
KMPHO (2014) Kent Gypsy, Roma and Traveller Populations JSNA Chapter Update 2014. Kent and Medway Public Health Observatory www.kmpho.nhs.uk/jsna/gypsyromatraveller/
LeedsGATE (2015) Dementia in Gypsy and Traveller communities. Leeds Gypsy and Traveller Exchange. www.leedsgate.co.uk/2015/09/07/dementia-in-gypsy-and-traveller-communities/
MECOPP (2012) Hidden carers, Unheard voices : informal caring within the Gypsy/ Traveller community in Scotland. Edinburgh. MECOPP.
Parry, G, Van Cleemput, P, Peters, J, Walters, S, Thomas, K, Copper, C (2007) Health status of Gypsies and Travellers in England. Journal of Epidemiology and Community Health 61 198–204.
Ryan, L, D’Angelo, A, Puniskis, M and Kaye, N (2014) Analysis of 2011 Census data. Irish community statistics, England and selected urban areas: Report of England. Irish in Britain/ Middlesex University
Tilki M, Curran C, Moloney K, Jones H (2016a) Dementia among Gypsies and Travellers. Journal of Dementia Care 24, 4, 12-13
Tilki M, Curran C, Moloney K, Jones H, Rogers E (2016b) Reaching out effectively to Gypsies and Travellers. Journal of Dementia Care 24, 5, 12-14
Truswell D, (2013) Black and Asian Minority ethnic communities and dementia – where are we now? . Better Health Briefing 30. London. Race Equality Foundation
VanCleemput P (2012) Providing healthcare to Gypsy and Traveller communities. Nursing in Practice May/June 26-28