Summary of online discussions

Thank you to those family carers of a person with dementia, health professionals who work with people with dementia, police and members of the public who participated in the online discussions we held at the end of 2020. It was one of the first times information has been collected online in this way and thanks to your engagement we can report the process was very successful.

We had eight small groups (with up to seven people in each group) that participated in considered and thoughtful discussions about preventing people with dementia getting lost. Most participants indicated that they enjoyed the process and appreciated hearing other people’s points of view. Between all the groups, several suggestions were generated for keeping people with dementia safe while maintaining their autonomy.

Recommendations

Some of the key recommendations made that relate to the community, GPs, police and aged care facilities are highlighted below.

Community

  • Nearly everyone felt that a public education campaign is needed to raise awareness of the risks of a person with dementia getting lost. Raising awareness about needing to involve Police as early as possible was also identified as a key area. However, there wasn’t agreement about who should fund this.
  • 95% agreed that people with dementia who live at home should have their risk assessed with the assessment findings used to direct care strategies. However, there wasn’t agreement about who should be responsible for conducting the risk assessment.
  • Most people felt that tracking technologies should be worn by people with dementia so they could be found if they do go missing but acknowledged that there are associated consent and privacy issues.

Police

  • Messaging should be improved so people know that they should contact police as soon as possible after a person with dementia is noticed missing.
  • Most felt that Police need more education about dementia and the associated risks of getting lost.
  • There should be a national registry of people who are at risk of getting lost. This registry should be accessible to police from all states if a person on the registry gets lost.
  • 92% of participants agreed that an alert system like the Amber Alert should be considered for use when people with dementia go missing. There was no agreement about who should fund this.

GPs

  • Most felt that GPs should be educated about the risks of a person with dementia going missing and strategies to mitigate this risk.
  • 74% of participants agreed GPs should have a role in educating people with dementia and their families about the risks of going missing.

Aged care facilities

  • Admission processes should be changed to ensure an aged care facility gets as much information as possible about a person to enable accurate risk assessment.
  • Risk assessment should be carried out regularly for all residents.
  • All facilities should have a missing person procedure that all staff are made aware of through regular training and drills.
  • The physical environment of aged care facilities should be modified to dissuade people from leaving e.g. safe outdoors areas, engaging environment, disguised doors.
  • Use of GPS devices and ID wrist bands should be used where appropriate while considering privacy and consent issues.

What next?

  • We will be putting these suggestions to people who are living with dementia to get their views about the impact for them. If you know anyone who is living with early-stage dementia or memory problems who would be interested being part of these online interviews, please read more about the interviews.
  • We will also be asking representatives from police services across Australia for their thoughts on the feasibility and practicality of implementing some of the suggestions identified. For example, what do they think the criteria for issuing a public alert should be?
  • Responses from consulting these groups will feed into a series of policy recommendations that will we work towards being implemented.

In the meantime, please keep spreading the word about the importance of this issue. When you have the opportunity, let others know about the risks for people with dementia and look out for anyone in your community who you think may be lost and need help. We will also post project updates on this website.