Day to Day practicalities
as dementia advances
This is a small list exploring some of the practical challenges and strategies that you night come across or be in need of.
One carer explained:
‘It is often said – and quite rightly – that dementia care is a roller-coaster ride. What works one day may not work the next. You need to have a few tricks up your sleeve, as the one that worked yesterday may not work today, although it might work again tomorrow! I used to get quite disappointed when I found a good ‘solution’ but then life moved on! Another set of challenges, another set of solutions needed.'
We found this to be quite a beautiful set of, what the Family Caregiver Alliance calls ‘Real-Life strategies’ for dementia caregiving. Quite humorous in some parts, realistic reflections that may be helpful as you tackle the everyday realities and practicalities of caring as dementia advances.
As dementia advances eating and appetite can often change, it can be hard to know how to combat this, below we’ve looked at some ideas and stories that could be helpful. We found that as we looked at different websites they suggested opposite things - some would suggest using big plates to encourage eating, so they serving size looked smaller, while others would suggest small plates, so as not to overwhelm. This just shows that these suggestions in the end, come down to each individual caring situation.
We have found these three cook books to be inspiring and fun. They are described as cook books which ‘celebrate the dignity of older people, people with dementia ........ by offering nutritious, glorious food across a range of dietary needs, letting the 'flavours do the talking.'
These can be purchased and explored at https://www.hammond.com.au/shop/food-culture
Some common experiences of carers
‘Sometimes I’d come back from being in the kitchen, and it was not uncommon for me to find that my husband had placed all his lunch in his drink and created an inedible concoction!’
Often ideas that work for one person will not work for another, so give them all a go if you need. Something will eventually work! (and then it might change again!)
'If appetite or weight loss have become a problem, buy large crockery to make portions look smaller'
Simon, whose mum had dementia
Experiment with crockery - for some people plain coloured plates work and somehow encourage or do not hinder eating. For others, plain plates work better.
'When asking questions to someone with dementia – such as what they want for lunch – give them a choice, but not too much. Don’t just ask ‘What do you want for lunch?’ because they struggle to tell you an answer. You could hold up pictures of the item (or even the actual item,) so they can point to what they want.'
Russell, cares for his wife with early-onset dementia
Cut food into bite-sized chunks – including tiny bite-sized sandwiches (and make sure the fillings are not too ‘dry’). Brioche bread is a nice soft option.
Lots of different things can be done with Sustagen – mix it with jelly for an easy dessert, or add it mashed potato (the neutral one doesn’t have so much sugar - but it would be nice if there was a non-sweet variety!), or minced chicken, with a nice creamy sauce
Some more tips here: https://www.caregiver.org/feeding-and-nutrition-dementia
Some tips from Dementia Australia providing some information and practical tips on helping to ensure a person with dementia is well nourished
drinking and hydration
There are many websites that detail causes of dehydration for those with dementia and tips on keeping up hydration. We found the website below to cover many of the details and tips in the most easy to read way.
5 ways to prevent dehydration
A story from Gaynor
Sometimes you just have to learn the hard way. Charlie and I were sitting at the table together and he seemed so tired and groggy. I wasn’t sure what was wrong but after a while he just slumped on the table. Alarmed I rang for an ambulance. The person I spoke to was wonderful – she told me to get him on the floor if I could, which I could just manage, and stayed on the phone advising me until the ambos arrived. They were there quickly and gave him various tests and decided he was dehydrated. They gave him water and waited with us until he was recovering helping to get him into a comfy chair. I felt so stupid. I should have been keeping an eye on what he was drinking but I didn’t have that awareness then – I certainly did after that fright. Lots to drink – water, fruit juices, milky drinks, whatever he was in the mood for. There was always a glass in front of him after that day!
But it was also one of those times when you feel guilty that you aren’t doing enough, or don’t know enough – but we do what we can and I had to learn to be kinder to myself too.
This website suggests some things that might show someone is dehydrated
Having water always in reach works for some people
Try different containers, and then use whichever works best. You might try sports bottles, sippy cups, straws or small bottled waters. For persons with advanced dementia, there’s even a type of syringe that you can use to help get fluid into the back of their mouth, where the swallowing reflex will often take over.
Jelly is great.
Reusable silicone straws were really useful too (great to keep in your bag when you are out)
For later stages, edible water jelly drops are being developed, although they are not in production yet!
Bathing and toileting
Gaynor: Kylie bed protectors are fantastic – and wash well. Bed protectors come in various sizes, and I used to pop a disposable one on the top for small problems – it saved changing the Kylie.
And if you are using chair protectors, look for the pet ones – they are MUCH cheaper than the human variety, and often better quality! My pet ones are 60x60cm and have small strips to pull off so they will stick in place.
Showering and washing
Not up for a shower?
Having one of those ‘I don’t want a shower’ days?! Try using Tena’s Wash Cream – it is a no ‘soap and water’ cleanser so no rinsing needed! And that’s good news. You don’t have to wash it off as you do with soap! So it’s great for difficult days, bed-ridden days, and protects that delicate skin.
And Contiplan All in One Cleansing Cloths (a super soft and creamy ‘wet cloth’) are so moist and soothing to fragile skin – you’ll want to use them yourself! Shop around as they are a bit expensive – but worth it.
A Wife's idea for showering and adapting and clothing
A simple video with some great suggestions.
You can purchase the Tena wash here: https://www.tena.com.au/products/specialist/skin-care-range/wash-cream/
Pain Check App
This is developed for medical practitioners. If carers are concerned that their person is experiencing pain, this app may be able to be suggested to their GP. The app uses smartphone technology to visually analyse facial expressions and asses pain levels in real time.
furniture, equipment and home modifcations
If there are small height differences from one room to another (which might cause tripping or be difficult for a wheelchair), think about getting a rubber threshold ramp. They can be cut to size and are available in different heights.
Second hand equipment
Take a look at these classifieds type websites that you may be able to find specialist home care equipment and furniture:
Label light switches as a reminder
other helpful hints
Top Tips from Carers
36 tips and ideas from people who have cared for someone with dementia care
'We colour coded mums keys and door handles with different coloured electrical tape. Each key corresponds - front door - red on key - red on door handle, back door - blue tape on the handle, blue on the key etc. Three years post diagnosis whilst mum struggles to do many things, she can still open her door with the correct key first time.'
From Christine on livebetterwith.com, her mother has dementia