Managing Dementia in IDD: What to Ask for and Expect as a Caregiver


Managing Dementia in IDD:

Care providers play an integral role in coordinating and managing the care of a person with IDD who has been diagnosed with Dementia. Vigilant health monitoring with specialist referrals as appropriate can promote optimal health for as long as possible.

Care Coordination may encompass services across three sectors (health, disability and aged care). The person remains eligible for disability-related supports but may also be eligible for aged care services. A person with younger onset Dementia may be eligible for some aged care services based on their diagnosis.

Adults with IDD frequently fall through the gaps between services, and their care providers express difficulties navigating appropriate pathways to care. When making referrals, check service eligibility criteria and ensure that the referral specifies how the patient meets these.

Sharing the Diagnosis:

Communicating the diagnosis to the person with IDD is important as it allows them to be as involved as possible in decisions regarding their care. Sharing the diagnosis in a manner that the person can understand may require some planning. Ahead of this discussion, Care Givers/Providers could helpfully:

  • Ask if they want a support person to be present
  • Ask what communication aids they usually use, if any, and ensure these are available at the time
  • During the appointment:
    • Adapt your communication style to meet their needs
    • Gauge the person’s capacity to understand the past, present and future, and the way they normally talk about these things. Tailor the way you share information about dementia accordingly
    • Break the information down into chunks and check their understanding as you go.
    • Communicate not only the diagnosis but also the sorts of supports available to them and any options regarding future care. The diagnosis should also be communicated to the person’s support network, provided consent to their involvement is given. It is helpful to also provide education regarding Dementia and what to expect.

For additional information, support and/or guidance, please consult directly with your Care Manager.

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