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For people with Down syndrome, family members, caregivers and professionals.

Dying Well with an Intellectual Disability and Dementia

July 2017 | Service et al. - Journal of Dementia Care (2017)


Collaboration between palliative care, dementia care, hospice provision, and intellectual disability services is required rather than any one of these systems working in isolation. This is necessary because mainstream ageing and dementia-specific determination tools and scales may have limited value in discovering whether an adult with intellectual disability has advanced dementia and is close to dying. It would also help intellectual disability providers to consider how "passive support" can actually be a means of active support for someone who also has dementia. The challenges for those involved with end-of-life support include enhancing education and training on advanced dementia, which may be particularly urgent for intellectual disability care staff. Training in personal care of people with advanced dementia would be helpful, as would understanding signs of subtle decline that may indicate approaching end-of-life and ensuring individualised supports or interventions in various living situations to enable dying with dignity. Education and training on intellectual disability would be valuable for staff in generic residential care settings for older people, wherever they are places of care for people with intellectual disabilities at the end of their lives. As a minimum, this should include understanding individualised methods of communication, which may be nonverbal prior to dementia, and knowledge of the non-dementia related health implications of ageing with an intellectual disability, particularly Down's syndrome. While many needs of adults with an intellectual disability at the end of life are the same as for others, critical differences have been highlighted. Failure to address these differences can lead to unrecognised and unmanaged symptoms, further decline and a heightened risk of diagnostic overshadowing. Ill-health or end-of-life indicators can be wrongly attributed to the intellectual disability or the dementia, resulting in delayed referrals to palliative care or hospice care.

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