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Permalink Reply by Jill D on April 11, 2012 at 19:20

Sam

 

Video useful, more needed in bite sized chunks like this.  This technique can work but other times the lack of choice can prove a problem, the dementia person feels unempowered, it is the tone of voice which sometimes works, list a few things with the tonal emphasis on one thing.

 

Could I suggest that you have a section on this site with a number of videos on different aspects, lump them all together with clickable links, when there is a crisis you need to find help - FAST.  By having one section it might be possible to go to a known section and locate the problem quickly.

 

A suggestion, when a crisis is happening it can be very lonely, you feel so helpless, it feels as though there isn't a future.  Could I suggest a carefully thought out video that says something along the lines that the viewer isn't alone, that there will be a tomorrow, something that gives the viewer confidence and self respect, a dementia crisis is horrendous as i am sure all those who look after a dementia person will testify,  It needs something like a face to face session with someone who actually knows about dementia.

 

 

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Permalink Reply by Sam Cowley on April 12, 2012 at 17:40

Hi Jill,

Thanks for your feedback. Great to hear your thought on how we could develop these into a useful resource.

We are looking at creating some more videos, so your suggestions for the video section are particularly useful.

I have set up a new discussion for users to feedback what sort of health and wellbeing information they would like to hear more about. There is also the discussion for giving feedback on the way the site works and it's design.

So please do let us know if you have any more ideas for changes or new content that you would find useful!

Best wishes,

Sam

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Permalink Reply by Sam Cowley on May 30, 2012 at 15:47

Hi all,

Just wanted to let you guys know first. But I am going to be announcing a series of dementia awareness events which are taking place throughout the UK over the next few months. These range in size and format, but will always have a range of speakers and attendees, from Health Care Professionals and Local Council members, to charities like Alzheimer's Society and Bupa dementia experts like Graham Stokes. 

If you can make it to any, they could be a great opportunity to talk to those responsible for delivering dementia care in your area, and to get your voice heard.

The first event takes place on Thursday 7 June in Liverpool. If you are interested in attending please call the St Nicholas Nursing Home on 0151 931 2700 for more information.

I will be putting up more information about other dementia events asap.

Let me know if you have any questions or problems.

Best wishes,

Sam

Attachments:

• Dementia Awareness afternoon (2).pdf, 246 KB

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Permalink Reply by Sam Cowley on June 8, 2012 at 13:02

Hi all,

I wrote a blog about yesterday's dementia awareness day.

I will be promoting some more events over the next month, so keep an eye out!

Sam

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Permalink Reply by Sam Cowley on June 18, 2012 at 10:01

Hi all,

For Carers Week, we will be holding a number of question and answer sessions with various medical experts. Graham will be once more taking part.

If you have a question for any of the experts please visit the ask the expert section. Submit any questions by Wednesday at 5pm as the experts will be responding on Thursday.

Best wishes,

Sam

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Permalink Reply by Jill D on June 18, 2012 at 23:20

I would like to know if there is a case for day centres at night? Mum is often sundowning, often wide awake at night, it is killing for us.  Day time care out of the house could be problematic as she often sleeps during the day.

 

Has anyone ever considered providing care at night in a social setting, I had in mind something like the nurseries they had in Russia where the mums deposited their children at a very early hour and collected them very late, kids could sleep at the nursery.  We don't want a stranger in our home at night but I did wonder about the merits of being able to drop her off late afternoon and collect mid morning.  Mum is sometimes very lucid at night and wants to chat then sleep, it becomes killing for me as I am expected to get up  early and prepare her breakfast, add all the loo breaks during the night, it isn't too clever. Is this a silly idea?  What are the implications for confusion of location?

 

Has this been tried?  Is this sort of thing in operation around the country?

 

Thanks

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Permalink Reply by Sam Cowley on June 19, 2012 at 17:04

Good question Jill.

I will forward it on to Graham who will be posting responses here on Thursday.

Many thanks,
Sam

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Permalink Reply by Rachel Simpson on June 22, 2012 at 8:57

Hi Jill,

Please see Graham’s response below:

Not a silly idea at all. People with dementia have care needs that can surface across 24 hours and may sometimes be unexpected and unpredictable.  Consequently, caring families most definitely want flexible respite care whether that be day, evening or over-night care, or especially the opportunity to spontaneously ‘pop in’ with a loved one so they can have a break for a couple of hours because it’s all got too much, or something has cropped up, or it would just be nice to go shopping, go to the hairdressers or visit a friend without having to keep a watchful eye or be fretting about whether all is well with a partner or parent with dementia at home alone. I think night time is the least likely of these opportunities to be used – I might be wrong – as a loved one with dementia trying to sleep in a strange place, and equally waking in an unfamiliar setting may be so disruptive that ‘once tried, never repeated’. However, this is not inevitable, especially if there is a seamless transition from late-afternoon/evening care to night care and if the nights of a carer are so disturbed night-time care is a service that ought to be offered because the benefits could be immense.

Jill D said:

I would like to know if there is a case for day centres at night? Mum is often sundowning, often wide awake at night, it is killing for us.  Day time care out of the house could be problematic as she often sleeps during the day.

 

Has anyone ever considered providing care at night in a social setting, I had in mind something like the nurseries they had in Russia where the mums deposited their children at a very early hour and collected them very late, kids could sleep at the nursery.  We don't want a stranger in our home at night but I did wonder about the merits of being able to drop her off late afternoon and collect mid morning.  Mum is sometimes very lucid at night and wants to chat then sleep, it becomes killing for me as I am expected to get up  early and prepare her breakfast, add all the loo breaks during the night, it isn't too clever. Is this a silly idea?  What are the implications for confusion of location?

 

Has this been tried?  Is this sort of thing in operation around the country?

 

Thanks

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Permalink Reply by Sam Cowley on July 2, 2012 at 11:52

Graham Stokes will be speaking this week at a dementia seminar in Elstree and next week in Cumbria.

 

Find out more about these events:

Elstree dementia seminar

Cumbria dementia seminar

 

He will also be appearing at a number of dementia events throughout August. More info coming soon to the events page

 

Best wishes,

Sam

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Permalink Reply by Sam Cowley on February 26, 2013 at 10:46

Interesting story in the Independent today about a young woman who gave up her career to care for her Grandmother who was living with dementia.

Sam

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Permalink Reply by Sam Cowley on June 10, 2013 at 16:36

Hi guys,

Just to let you know that for Carers Week 2013, Graham will once again be answering your dementia care questions.

So if you have anything you would like to ask, please either post a question below, tweet a question to @CarewellUK or email your question privately to info@carewelluk.org.

Graham will then respond to questions on Friday 14 June.

Best wishes,

Sam

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Permalink Reply by Sam Cowley on Saturday

Question from Twitter:

Why does my mother occasionally refuse to swallow her pills, and try to chew them?

Graham's response:

When caring for a person with dementia it is important to bear in mind that as a person with dementia deteriorates awareness of personal needs, even the fact they have dementia diminishes until lost. When combined with a loss of reasoning and logical thought it is unsurprising that your mother occasionally does what she does as she will not comprehend that she is taking pills for she will have no understanding that she needs to, and probably no sense that they are capsules to swallow. Consequently, she may misinterpret pills as sweets and start to chew them.

 

Please take encouragement that your mother swallows her pills most of the time and when she does, try to make a mental note of the circumstances, the time of day, her mood, your approach at these successful times for this may help you understand better those occasions when she does not. I’m a firm believer in what is known as appreciative enquiry. This tells us that when things are not working out rather than dwelling on these episodes, instead think of the times things do work out and this may give us the clues to remedy situations that go wrong.

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