Diffusing Anger in Dementia Care

This post is probably not what you expect.

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.

The Grieving Process – My Top 10 Learnings

Silhouette of male person against a colorful horizon.

Today I wanted to share some personal thoughts on how I have felt since my Dad passed away in Feb.

After the funeral I was totally humbled by the support from family and friends. I also felt really strong because of all of you in our ‘Dementia Downunder’ community.

I never dreamed I would be leaning on the support of hundreds of people (mostly whom I have never met) and sharing my thoughts so openly. I can only imagine if there is people out there alone, or with limited family caring for someone with dementia, that our community could really fill a void for them.

‘DD’ and the stories I told over the years gave me a real feeling of pride in my Dad, my Mum, my family and the legacy we have created.

When I walked back into Dad’s nursing home a few weeks later after he passed I still retained that passion to advocate, and instantly re-ignited the amazing connection I have with residents and their families.

The grieving process is teaching me many things and will continue to do so. I will share some biggies for me:

1. Death is not necessarily bad if you leave behind a legacy which helps others.

2. The journey of dementia can teach you so many things about life, living in the moment and discovering yourself as a person and what you stand for.

3. Values and ethics come to the fore with dementia care. You discover what matters, what doesn’t, and what you have to fight for.

4. Older people are so valuable, wise and funny and we often don’t take the time to really nurture them and learn as much as we could from them. Take the time and you will reap the rewards.

5. Support is so comforting when you open up to like minded people that understand where you are at and what you are going through.

6. Sharing stories is therapeutic and regularly talking positively about the person who has passed away is important.

7. Thanking those that helped along the way allows them to be encouraged to keep doing this for others.

8. As a man I no longer worry if I shed a tear in public. It reminds me I am human, and is respect for how that person made an impact on me.

9. Grieving can be positive and is a great excuse to roll out some great old stories and have a few laughs.

10. Grieving for my Dad makes me a better Dad. I regularly draw on what I learnt from him and use all the ‘life tools’ he instilled in me.

Another Way To Look At A Feared Dementia Milestone

Life-Files-Sorry-Who-are-You

The significant event that most family members fear is when the person with dementia no longer remembers your name or who you are. Often by this stage the person with dementia has already experienced the following over many years:

• increased forgetfulness
• difficulty concentrating
• decreased work performance
• difficulties managing finances
• difficulty travelling alone to new places
• have trouble completing complex tasks
• may be in denial about their symptoms
• they may withdraw from family and friends
• socialization becomes difficult
• they need assistance to complete their daily activities
(eg bathing, dressing, preparing meals)
• significant memory loss (eg forget their address etc)

Imagine what it’s like to struggle with everything above, every single day & worry about why you are doing it, and have to experience the impact it has on your friends & family. People who used to come up to you and chat, now sidestep you because they don’t understand dementia and all that comes with it. The feeling of loneliness and fear is often felt years before the person forgets your name.

Below are some positive strategies that I personally found helpful as a family member:

  1. Acknowledge the dementia and embrace it.
  2. Every time I feel sorry for myself, I think about what it has been like for the person with dementia.
  3. Find new ways to keep the emotional connection (adapt to their decline).
  4. Spend time together (this will ease the fears)
  5. Simplify everything
  6. Set the person up for success by not asking questions all the time (eg what’s my name Dad?)
  7. Learn new ways to communicate (use body language).
  8. Have Fun…..Enjoy many Memorable Moments (no matter how small they might be)
  9. Keep Living Life…

The Shower – Tips For Reducing The Stress – Part 1/3

Probably the ‘no.1 hotspot’ for frustration for people with dementia (and their carers) is the bathroom. Showering is difficult and exhausting, and everyone seems to end up wet. I have decided to share my favourite showering tips across 3 sections :

1. Preparing for a shower
2. Having the shower
3. After the shower

There are no set rules as to showering but you need to remain flexible. As the disease progresses you may need to change your showering methods as the person may have less mobility, less cognition or be experiencing health factors. Please feel free to comment with any tips you may have.

1.PREPARING FOR A SHOWER:

  • People with dementia DON’T seem to like taking showers. A big mistake to make as a carer is to waste energy on trying to convince the person to have the shower and arguing with them.
  • They will more than likely refuse to take a bath or shower every time you ask. As a carer you need to ACCEPT THIS. If they take the shower willingly…consider it your lucky day!
  • It is better to attempt to shower the person everyday, as opposed to twice a week. With people with dementia establishing the ROUTINE cannot be underestimated. It doesn’t matter if you succeed everyday, but is great if you can establish a pattern (eg shower the same time each day).
  • How often should they have a shower? No set rule…but I would aim for at least 3 times per week. Some cultures do not have showers for weeks. having a regular shower will reduce the risk of urinary infections etc.
  • BE ORGANISED – prepare some fresh clothes in advance inc pull-ups, pads etc…I usually lay out the complete outfit (inc shoes) and make sure everything is unbuttoned, untied and facing the right way prior to showering – this will keep things efficient.
  • Pre-prepare your towels and flannels. I take in 3 towels (one for foot towel, one for face/hair, one for body) and 2 flannels. It is worth the extra towel washing afterwards to have a smooth shower experience within the bathroom.
  • Have all toiletries on hand and mentally run through your routine to ensure you have items lined up in order ready to go. I start our routine by brushing the teeth first at basin, then moving straight into undressing, then showering.
  • Warm the environment – turn on the lights and heat lamps and make the bathroom a cosy place to be in. Maybe even have some soft music playing.
  • Some people are very modest when it comes to taking a shower. As carers we need to RESPECT THEIR DIGNITY and do small things to protect their modesty. eg turn your head away where possible, cover them up quickly etc
  • Expect the “No’s!” when it comes to showering – try and keep things light hearted and relaxed and say something like ” Let’s get all nice and clean, and then we can make you a nice breakfast”. Keep everything POSITIVE and remind them how good it feels to be clean.
  • Avoid lengthy explanations, keep it short and simple where possible.
    When ready to take them to the shower, gently approach them and try and get their attention, aim for some positive rapport and keep things light and happy. Then reach your hand out to them (palm facing upwards) and wait for them to take it.
  • I like to emphasize that “WE are going to have a shower now”. I believe that if you do it as a ‘team’ it is a shared experience and will make them less likely to resist (as we are doing it together).
  • If in a care facility, I prefer to have less people in the bathroom ( is less confronting for the person with dementia). If two carers are doing the showering I would rather have one carer making the bed while the other washes the person. The carer not in the bathroom needs to be super alert as to what is happening inside the bathroom and be ready to fetch an extra towel or lend a hand if the carer doing the showering calls for them. Effectively the 2nd carer will act as their support person/assistant and is a critical role to how smooth the shower process goes.
  • Don’t be bossy when showering! You are better to calmly GUIDE THEM.