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Dementia: Equity and Rights

Equity and rights are terms which historically have not been closely associated with dementia. That is one reason why this publication is so important. Dementia is an umbrella term for a range of different conditions, all of which physically affect the brain, so it is often referred to as an organic brain disease. As a result of this, research, policy and practice has tended to focus on trying to find effective treatments and interventions for people with dementia. But it is only fairly recently that any significant attention has been paid to dementia, equity and rights. As with other issues affecting older people, (although dementia does occur among some younger people as this publication makes clear) it has largely been ignored until demographic and economic pressures have become too great. In some respects, dementia is playing catch up with other population groups affected by different health conditions and disabilities where issues of equity and rights have been central to discussions for a longer period of time.

Age and disability are just two of the ‘protected characteristics’ that this publication covers in respect of dementia. Dementia has, until recently, not been described in disability terms, but it is clear that the various impairments that the condition gives rise to mean that people with dementia have protection under the law as people with disabilities. Awareness of this is growing, partly because more people with dementia are describing it in these terms through networks like the Dementia Engagement & Empowerment Project (DEEP), and through publications such as Dementia, rights and the social model of disability.

But this publication is important because it looks across all the other protected characteristics as well – gender, ethnicity, sexual orientation, gender reassignment, and socio-economic status. It flags up issues where the risk and prevalence of dementia may vary for different groups and how access and provision of services must take into account the needs of particular groups. Minority groups often feel left out or misunderstood within systems created for the generic population. And for a condition that is likely to be life changing, potentially distressing for individuals and their families and friends, and still lacking universally effective treatments, it is essential that people, who may have been ignored, excluded or discriminated against for other reasons do not experience further inequalities because of having dementia.

Recognising that people from minority groups share intersecting protected characteristics informs the debate around this work and engagement with other organisations ensures that every minority group and protected characteristic is represented.

People with dementia are citizens of our society with rights - this publication provides invaluable information about those rights and should help to promote greater inclusion, access, equity, participation and empowerment for different individuals and groups affected by dementia. Marginalised groups have often had to be robust, resourceful and problem solving and therefore have insights and learning to share that addresses inequality and promotes best practice for all.