Dementia Care 2017 & Beyond…..My Blueprint for Positive Change

*Warning – The following post contains my own personal opinions on dementia care in 2017 and beyond. It is not intended to be disrespectful to anyone but more so spark ideas and some action in the community. Is this post emotional and created without complete knowledge of the politics and every single aspect?…Absolutely!…. Dementia is important…Dementia is different….and with me….. “It’s Personal!”.

The Blueprint:

• Government to acknowledge and address the growing tsunami of people with dementia and allocate adequate funding and resources to match.

• All hospitals to consider new pathways into the ED (Emergency Dept in Hospital) for older persons and especially those with dementia. Lighting, sound, environment, staff training all to be considered.

• Set up a Dementia Taskforce in each state to plan for the future, and have strategies and initiatives being discussed NOW.

• Have strategies to reduce ‘Code Blacks’ and have restraint as a last option, not a first option.

• Create purpose built dementia related facilities to cater for people with BPSD and other difficult conditions that cannot be handled by aged care facilities. (similar to Ward 18 and GEM units)

• Research for a cure is really important but so is managing the 400,000+ people already with dementia in Australia. Maybe the funding allocation for caring versus research should be reviewed? (I am not across the %’s here)

• Acknowledge and start genuinely caring for people under 65 of years age with dementia (younger onset dementia) and have age appropriate facilities for them in a central location (in four directions may be a bit unrealistic at this stage). The facility environment should be conducive to younger people and the person with dementia be considered with every single decision. No more people under 65 with dementia being placed in nursing homes.

• Aged care facilities to allocate their most passionate and best qualified carers to the people with dementia requiring the most care. Eg BPSD, Stage 5,6,7, and those in Memory Support Units. These people are so vulnerable and need the best care we can provide from those who want to be caring in that space.

• Media is to be encouraged to no longer promote false hope for families and stop writing about snake oil cures and listing off things that ‘may’ help with dementia. If there is no actual proof that something works, then it is not news.
• Encourage real life stories and personal accounts to be published in the media to create awareness. The ‘lived experience’ is really powerful and cuts through as it is genuine and sincere and demonstrates the hardship on a grass roots level.

• Our security teams in hospitals and dementia related facilities to have extensive ‘dementia specific’ training and formulate a different protocol for handling people with dementia.

• Stricter rules on ‘driving with dementia’ – The declines can happen rapidly and someone who is driving ok this week can end up driving through a shop window the next. This could save lives.

• Disabled toilets and bathrooms to cater for ‘people with dementia’ (and their caregivers) equally to other disabilities. Eg. space & equipment for carers within bathroom, appropriate and dignified signage etc

• Public spaces eg parks/playgrounds could all become ‘Care Parks/Playgrounds’ (or something similar) and facilitate everyone with a disability or cognitive impairment. One standard policy that covers everyone. We should all be considered and treated equally.

• Dementia will eventually be the no.1 leading cause of death in Australia (currently 2nd)….We need to prepare NOW.

What Would You Do If You Were Diagnosed With Dementia?

 

When dad was diagnosed I had no idea what dementia even was. Now that I know what it looks like I would certainly do things differently. Family and caregivers are impacted massively, so this list is to help make their life easier also.

This is my starting list:

• Tell everyone ASAP
• Get my financial affairs in order (will, advance care directive, power of attorney, guardianship)
• Organise all my bank accounts, service providers (gas, electricity etc) paperwork into clearly marked separate folders. (so a close family member could easily take over if required)
• Arrange my home to be changed to a ‘dementia friendly’ one. Eg rails in shower, label water taps “hot and cold”, etc…etc…
• Talk with my family heaps – offload my words of wisdom and stories to my wife and kids
• Make an impact on everyone I come in contact with – be super positive and tell them about dementia and how I am dealing with it. (no more stigma!)
• Talk with family and friends and have strategies on how to treat me along the journey and advise them of all the things that would upset me in advance.
• Write “My Life Story” document as a starting point for people to assist me. This document would change constantly and need to be reviewed monthly.
• I would write a massive list of everything I like and don’t like. It would be extremely detailed and include my fave colour (black), fave food(bbq chicken), fave smell(vanilla), how I like my coffee, etc..etc…(It would be in categories allowing for family to follow easily)
• De-clutter my home – free myself of things I no longer use.
• Write a personal diary to capture my thoughts and frustrations. (or blog)
• Hit the ‘bucket list’ real hard – eg go on holiday to fave destination, go parachuting etc…I would do this in reverse order with the most physically and mentally challenging things first.
• I would use video all the time. I would capture my favourite things and have them for the future when I can sit back and re-watch my memories.
• Visit the very best aged care facilities in advance and select the top 3 that I like based on my needs. Eg activities, environment, location to family.
• Sell my car and use the money to pay for new transport methods. Eg taxi’s and buses. (pay friends petrol money)
• I would make myself a personalised card that I could hand to people if I struggled with communication etc so they could assist me. It would have my emergency contact numbers on them.
• I would buy a dementia medical bracelet to alert people of my condition. Invest in a personal alert system and or KISA phone.
• I would try not to feel sorry for myself, but impart my knowledge and do talks in schools and community groups for as long as I am capable.
• I would surround myself with my favourite things and people.

This is my own personal list, and is very individual, and I am missing heaps of things, but I thought it may spark a conversation that would encourage many of you to add things that are important to YOU and we can all learn from these (and I may pinch a few of your ideas as well).

Approximately 1 in every 3 people will get dementia in the later years…a dementia plan is definitely worth thinking about!