Day 12: Dementia Awareness Month 2014
I presented at a forum in Melbourne yesterday about the needs of people with dementia, and what is either missing or ways to improve service delivery and care in the health care sector. Sadly, although our government has introduced Consumer Directed Care, and service providers have had to embraced, yet once again I was the only consumer there to represent people with dementia.
To my somewhat simple sense of logic, if consumers are not included in the conversations about what they want, and what is best for them, the ‘system’ will never get it right.
The overwhelming focus of the day was BPSD and the management of ‘challenging behaviours’ for people with dementia. In my opinion, almost all ‘challenging behaviours’ stem from an unmet need. Even if it is a person with delirium or a urinary tract infection without symptoms, it is still an unmet need.
If the staff caring for people with dementia do not have the appropriate education to assess and understand unmet needs, the care will always be focussed on the ‘deficits’ or ‘behaviours’ of the person, not the other way around. The clue here, is what is lacking is in the people caring for us, not the person with dementia.
My belief remains that if a person with dementia has a change in behaviour, it does stem from an unmet need of some sort, and the key to assisting the person to exhibit less ‘challenging behaviours’ is better educating those people caring for that person, not treating the person or ‘behaviour’ with drugs, restraint or other less optimal ways, in order to make them compliant.
If our children start to display ‘challenging behaviours’, we try to find out what is wrong, including learning to become better parents, not drug them or lock them up…
The presentation I gave ended with these points, as I believe they urgently need addressing for things to improve for people with dementia, and the frail and infirmed elderly.
- Consumers are still missing in the important conversations, and must be included.
- Aged care is still not providing good care as the norm, but rather as the exception.
- The ACAT system still age discriminates, and is very hard to access until there is a crisis.
- The Aged care complaints system does not work effectively for most people.
- Overall, the care in the acute setting for people with dementia and cognitive impairment is still appalling; there are pockets of good care, and an examples of this are the Queen Elizabeth Hospital since they employed Dr Faizel Ibrahim and he introduced the 10 Principles of Dignity in Dementia Care, and the Ballarat Hospital.
- The ‘Prescription of Disengagement’ when a person is newly diagnosed with dementia is disempowering and very negatively impacts on the person and their family to have any hoe that trying to live well with dementia is of any value at all – it givers the clear message, THERE IS NO HOPE, and is wrong.
- People with dementia and need to be offered authentic rehabilitation, and the elderly in RACF’s need exercise programs to improve their quality of life and well being.
There is a strong need for the 10 Principles of Dignity on Dementia in the residential and acute care settings, which I blogged about recently, and am including again here – 10 Dignity in Care Principles
- Zero tolerance of all forms of abuse
- Support people with the same respect you would want for yourself or a member of your family
- Treat each person as an individual by offering a personalised service
- Enable people to maintain the maximum possible level of independence, choice and control
- Listen and support people to express their needs and wants
- Respect people’s privacy
- Ensure people feel able to complain without fear of retribution
- Engage with family members and carers as care partners
- Assist people to maintain confidence and a positive self-esteem
- Act to alleviate people’s loneliness and isolation