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Dementia in Individuals with Intellectual Disabilities

Written by Samantha. L | Behaviour Support Practitioner, PsychPhys™

Dementia is becoming more common and was reported as the 2nd leading cause of death in Australia in 2020 (Australian Bureau of Statistics, 2020). People often associate dementia as an age related condition, however, early onset dementia is estimated to increase from 487,500 people in 2022 to 1,076,000 people in 2058 (Dementia Australia, 2022).

More importantly, individuals with Intellectual disability (ID) are at higher risk of dementia (Dementia New Zealand 2017, Evans & Trollor, 2018). Understanding the linkage between these two conditions is important. It is not only essential for health professionals to be aware of it, but also necessary for carers to understand the importance of preventing and intervening earlier when noticing early warning signs.

When thinking about dementia, one of the most common symptoms we could think of is the person experiencing memory decline or being more forgetful. However, there are more early warning signs that we should keep an eye on (Dementia Australia, 2020).

  • Experiencing memory loss that is affecting daily living
  • Constantly repeating behaviour
  • Familiar tasks becoming more difficult
  • Social isolation
  • Being more confused about time and place
  • Struggle with abstract thinking
  • Taking less initiative
  • Showing reduction in judgement
  • Experiencing language problems
  • Behavioural changes occurring

When noticing these warning signs, we should intervene as soon as possible in order to be able to manage symptoms. Firstly, remember to seek professional help if you are unsure about the next step. It is also recommended to book an assessment as soon as possible. Diagnosis should not only be shared among the care team or family, we should also share the diagnosis to the individual in a way that they can understand (Evans & Trollor 2018).

The next step will be working on the future care plan with a multidisciplinary team, ensuring the person with dementia and ID is receiving the most needed support.

Understanding early warning signs is essential, but more importantly, we should know what are some things that we could do to prevent and reduce the risk of dementia. Below are the 12 recommendations form the World Health Organization (WHO) for dementia prevention:

  • Get involved with physical activity
  • Stop smoking
  • Making sure you are eating a balanced and healthy diet
  • Reducing alcohol consumption
  • Get involved with cognitive training
  • Engaging your social group
  • Manage your weight
  • Keep an eye on hypertension
  • Keep track with diabetes
  • Manage dyslipidemia
  • Manage depression
  • Be aware of hearing loss

It can be stressful for carers/family to take care of someone with complex needs, it is highly recommended to seek professional help if needed. Below are some useful resources:

  • Dementia Australia website
  • Carer Gateway website, Australian Government
  • Risk Reduction of Cognitive Decline and Dementia: WHO guidelines,
  • Book: What I which people knew about dementia from someone who knows by Wendy Mitchelle and Anna Wharton