Meeting the End of Life Care Needs of People With Learning Disabilities and Advanced Dementia

People with Learning Disabilities are an increased risk of developing dementia as they get older. Within the general population, those aged 65 and above, around five in every 100 people will develop dementia. In people with other forms of Learning Disabilities excluding Down’s Syndrome, 13 in 100 people aged fifty will develop dementia. This increases to 22 in 100 people aged 65.

People with Down’s Syndrome are at even greater risk of developing Alzheimer’s Disease. Some researchers have suggested a prevalence rate of 25 in 100 people at 40 years of age and 36 in 100 people at 50 years and 50-65 people in 100 when aged over 60.

Dementia is an umbrella term used to describe a group of progressive brain diseases that slowly affect the person’s ability to communicate, concentrate, remember and make decisions. It can also affect the person’s personality, feelings and the way they behave.

Research studies are critical of the lack of appropriate services for people with Learning Disabilities who go on to develop dementia. End of Life Care provision is no exception.

Staff who work in residential care settings often lack the knowledge and skills on how to care for a service user at the end of life. The training and skill sets of staff who care for people with Learning Disabilities need to be re-evaluated so as to understand and address additional education and learning needs.

Managers of care homes for people with Learning Disabilities need to be proactive in ensuring that good end of life care is a top priority within their establishments. One way of achieving this is to put in place a robust training programme for all staff which includes:

o An introduction to dementia

o Health co-morbidities in people with Learning Disabilities and Dementia

o Using a patient-centred care approach with people with Learning Disabilities and Dementia

o Death and Dying: Exploring Cultural and Personal Beliefs

o Loss, grief and bereavement

o Breaking Bad News – Sharing the diagnosis and prognosis with family carers.

o End of life care

o Collaborative and Multi-agency working

However, education and training alone will not address all challenges. Commissioners of services need to be prepared to review how services are funded. To ensure “good care at end of life”, managers need to take some bold steps and challenge commissioners on issues of funding and put in place robust training programmes for their staff.