A personal story about dementia carers and what I learnt

23 Apr 2018 7:42 AM
A personal story about dementia carers and what I learnt

Read a personal story about younger onset dementia. Caregivers face changing memory mobility, appetite, decision making and continence. Learn more.

Sad news this week as I learnt that a dear friend has younger onset dementia (YOD). My immediate thought was I wanted to help, especially with my experience as an aged care nurse.  I wanted to ring his partner to see how she is. This message was relayed through another friend but he was told abruptly that she doesn’t need any help. Another factor was she was considering putting him into a nursing home. He is only 59. Any friend would want to help and offer any support but the door was firmly shut. She has had some respite but after 3 years of 24/7 care she can see no other choice.

YOD can have a rapid decline, compared to older onset, so caregivers face changing memory mobility, appetite, decision making and continence in a matter of years. That is a lot to handle. On top of that, the stresses of 24/7 care are enormous. According to the Australian Unity Wellbeing Index (AUWI) the wellbeing rates for caregivers is the lowest of any group even lower than the unemployed or prisoners. This has been a consistent finding, from the AUWI, since 2007.

So why don’t dementia carers reach out for more help?

  • The long-term stress is overwhelming and full-time residential care may seem the only option
  • The person may not have taken respite or got in-home care service at any point
  • The stigma of dementia can be isolating for the carer

Other factors that may be considered when making the decision to place someone in a nursing home are:

  • When continence changes to incontinence some carers are not comfortable looking after their loved ones’ personal hygiene needs
  • When mobility declines - falls at home can increase

After hearing a speaker from Carers Tasmania this week talk about the role of carers and what they go through, I realised it was not my role to help. A lesson in understanding the difference between offering support and offering help.

If you know someone in this situation, and they are reaching out for help, then Carers Australia is the first phone call. They can arrange respite and counselling. The phone numbers for each state are here >>