Dementia: ethical issues

Stigma is still very common in dementia. As a result, people with dementia may feel devalued and excluded from mainstream society. Our ethical framework emphasises the equal value of people with dementia and the importance of acting in solidarity with those affected by dementia. There is therefore a clear moral imperative to tackle this stigma.

Combating stigma and promoting inclusion

We endorse the plans in England, Wales and Scotland to improve public awareness of dementia. However, information campaigns are only one part of the story. For dementia to be truly ‘normalised’, it needs to become an accepted, visible part of our society, in the same way that physical disability is increasingly recognised as ‘normal’. People with dementia need to feel comfortable carrying on with their usual activities, such as going to a club or out to lunch, participating in church activities, or taking part in voluntary work.

“Service providers” such as shops, leisure facilities and restaurants have a legal duty under the Disability Discrimination Act to make “reasonable adjustments” to enable people with dementia to use their services. Often, however, they may not realise this. Even if they do, they are unlikely to have sufficient knowledge of dementia to make appropriate adjustments.

We conclude

The Equality and Human Rights Commission should take appropriate action to publicise:

• the legal duties to which all “service providers” are subject under the Disability Discrimination Act to ensure equal access to their services by people with dementia
• ways in which this could be achieved

The Disability Discrimination Act 1995 Code of Practice should explicitly address dementia with examples of good practice

The role of society in providing care and support

People with dementia experience a number of disadvantages in the current care system. The services needed by people with dementia are often classed as ‘social’ services. However, these services are sometimes not available until a crisis occurs, because of financial pressures on social services departments.

Dementia is a medical disorder. The needs arising out of the disorder should therefore be met in the same way as those arising out of other serious illnesses such as cancer. It is not acceptable to make people with cancer wait until their support needs have reached a crisis before providing that support. It should not be regarded as acceptable for people with dementia to wait in this way.

We conclude

The availability of services needed by people with dementia should not be determined by classifications of care. In allocating resources, and in determining standards of care, it should make no difference whether the care is classified as ‘health’ or ‘social’.