Dementia: 'Some ideas of what to do when...'

Several informative videos from Dementia UK.

Dear Reader,

When we were caring for Dad, having a calm, stable care routine offered him the comfortable reference points he needed to navigate his waking hours. It wasn’t the hands of a clock that prompted his actions. Our hugs and gentle nudges oriented him in space, time and connection. He didn’t always like the nudges! His main health issues of bladder cancer and congestive heart failure exhausted his tired body, and dementia sometimes robbed him of his ability to frame his thoughts. So, there were moments of distress, shouts or tears, but we also shared moments of deep connection and love, made all the more poignant and meaningful because of …well, everything that was going on!

We were propelled forward by many things that were out of our control (symptoms, medical appointments, emergencies, etc.)—surviving. We held onto the small, precious moments of laughter, reminiscing together, and listening for deep, resonant snores of peacefulness—thriving in the small moments.

We’re generally not trained or seek to learn more about these topics until we have to. So, there’s a huge tsunami of information when you face a medical crisis or diagnosis. When Dad was first diagnosed with vascular dementia, I googled and researched a lot, and well-meaning people offered a lot of unsolicited advice.

These short videos offer practical tips. They’re here alongside other resources that have helped me. I would advise you not to watch everything all in one go; dip in and out at your own pace. Try to be mindful of your feelings and energy.

Take care, big empathetic hugs.

Victoria

Introduction:

Dementia UK has released several informative videos (November 2, 2021 & January 17, 2023) on dementia-related topics. A few friends were looking for information to help them so I found the Youtube videos and links.

Table of Contents

1. What to do when a person with dementia is distressed.

2. Delirium (sudden confusion).

3. What to do when someone doesn't recognise you anymore.

4. Looking after your relationships when you care for someone with dementia.

5. Jude's story - living life with young onset dementia.

Dementia UK Website and nurse support:

Dementia UK: Click here

Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?

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1. What to do when a person with dementia is distressed

When a person with dementia becomes distressed, it is often because they are trying to communicate something to you. Admiral Nurse Paulette Winchester-Joseph suggests techniques that can try to prevent distress in the first place as well as methods for promoting calm in the moment. November 2, 2021.

Read more here: Coping with Distress.

2. Delirium

Delirium is a sudden onset of confusion that can occur more commonly in older people, whether or not they have dementia. In this video, we provide some tips about what delirium is, how you can recognise it, what causes it, and what you can do about it.

Read more here on Delirium (sudden confusion).

The following advice is taken from the website:

Delirium can be serious, so it’s vital that the person receives  medical assistance as soon as possible.   

If the person is at home, contact their GP and ask for an urgent appointment. If they are in hospital, tell the nurse or doctor who is looking after them. If they are in a care home, tell a carer. 

If you think the person is seriously or suddenly unwell, take them to A&E or call 999 for an ambulance (in the UK): in rare cases, delirium or its underlying causes can be life-threatening.

You could also try these ideas to try to ease the person’s distress: 

• keep calm and reassure them – you might need to remind them who you are, where they are, and what day it is 

• speak in short, simple sentences  

• try to distract them with activities like watching TV, listening to music or looking at photos  

• encourage them to eat and drink, for example by offering favourite foods 

• help them find the toilet if needed  

• stay with them if they’re walking around in case of falls 

• keep a dim light on at night 

• avoid disagreeing with them, even if they’re saying unusual things – instead, try to change the topic of conversation 

3. What to do when someone doesn't recognise you anymore.

Chief Admiral Nurse and CEO, Dr. Hilda Hayo. November 2, 2021

Read more here on Dementia and the lack of recognition.

4. Looking after your relationships when you care for someone with dementia

Vic Lyons speaks on how to look after your relationships when you care for someone with dementia. November 2, 20221.

Looking after yourself when you’re looking after someone with dementia.

‘Being a carer is only a part of who you are it’s not all of who you are’

5. Jude's story - living life with young onset dementia Jan 17, 2023

Jude was diagnosed with young onset Alzheimer's disease in 2021 aged 57. In this film Jude, her partner Becky and best friend Johnty talk about how she has continued to live a full and active life since her diagnosis and about the support they've received from Dementia UK, and what it has meant to them.

Read other personal stories.

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