BBC Radio Sheffield Breakfast Show – Talking about the new Young Onset Dementia Support Group in Sheffield

Last Monday, I had an early start getting to Sheffield Railway Station by 7 am to meet Donna Chadwick from Young Dementia UK.

We were being interviewed on BBC Radio Sheffield about the new Young Onset Dementia Support Group which had been set up by Young Dementia UK at the Graves Health and Sports Centre in Sheffield.

Unsurprisingly, Donna’s train was a couple of minutes late and we set off for the radio station. I managed to get us lost as I took a wrong turn on the way but we eventually found our way there.

We were taken upstairs to wait to go on  thinking we had ten minutes to chat before we went into the studio, but we were informed that we would be going on straight away “because of Brexit”.

Toby Foster the presenter greeted us and we had a quick chat while the news was playing and after a couple of phone calls about Brexit, we talked about the new group and my experiences.

After 10 minutes or so we were done and said our goodbyes before walking back to the railway station, Donna to get a train and I got a taxi home.

It was good to be able to talk about the new group on air and hopefully a few more people will now know about it as I know the information is still not reaching all professionals and people living with Dementia.

Heres a link to the radio show we were on, it should start just before we are on, if it starts at the beginning go to 37 minutes.


Five Years On: Why DAI? Where Have We Been? Where Are We Going?

Dementia Alliance International Webinar, January 30 / 31, 2019

“Five years on: Why DAI? Where have we been? Where are we going?”

  • Wednesday, January 30, 2019 (USA/CA/UK/EU)

  • Thursday, January 31, 2019 (AU/NZ/JP/SGP/TWN)

Please note: this is one event, set in a number of different time zones.

PRESENTERS: Kate Swaffer & John Sandblom

John and Kate are co founders of DAI, and have been active board members from day one of this organization. They were also very in the setting up of DAI prior to the launch on January 1, 2014.

John has lived in central Iowa, in the US for all of his life except for college which was eastern Iowa at the University of Iowa. He spent the majority of his working life in business-to- business sales, first print advertising followed by television advertising and then telecommunications sales. He was diagnosed with Younger Onset Atypical Alzheimer’s Disease at the age of 48 in 2007, by a gerontologist that specialized in dementia.

Kate grew up on a farm in rural South Australia, and has lived in Adelaide Australia since 1977. She commenced her professional career as a nurse, specialising in dementia and aged care, and then worked in operating theatres. She has also worked as a chef, and also in health care sales. She is very active globally for DAI, has published two books on dementia, two poetry books, and is involved in research into dementia at three universities. Kate was diagnosed with younger onset dementia (svPPA) aged 49 by a neurologist in Adelaide.

ABOUT THE WEBINAR: “Five years on: Why DAI? Where have we been? Where are we going?”

With a new diagnosis of dementia every 3 seconds, it is not surprising that DAI has continued to grow since its launch five years ago. John and Kate are both co founders, and are also co hosts of peer to peer support groups as well as very active board members. They are both often asked why and how DAI was set up. In this Webinar, they will cover the history of DAI, provide an overview of what we have achieved to date, and discuss where they see the future of DAI.

The most important part of DAI’s work is the weekly peer to peer support groups for members, and the global advocacy for claiming our human rights and disability rights. This webinar will also be an opportunity for members, families, as well as our sponsors, supporters, academics and professionals working in the field to tell us what they would like to see in terms of DAI’s future direction.

By working together collaboratively, we are all stronger, and can achieve even more than what the original founding members first dreamed of. We welcome everyone to register and join us for this EXCITING Webinar. Without you all, DAI would not be where it is today.


Wednesday, January 30, 2019 (USA/CA/UK/EU)

10:30 am Honolulu
12:30 pm Oregon Portland/San Francisco USA
12:30 pm Vancouver CA
2:30 pm Des Moines/Chicago USA
3:30 pm New York USA
3:30 pm Toronto CA
8:30 pm London/Glasgow UK
9:30 pm Paris, Munich, Amsterdam, EU

Thursday, January 31, 2019 (AU/NZ/JP/SGP/TWN/CHN)

7:00 am Adelaide AU
6:30 am Brisbane AU
7:30 am Sydney/Melbourne/Canberra/Tasmania AU
4:30 am Perth AU/Taipei TWN/Beijing
5:30 am Tokyo, JP
9:30 am Auckland, NZ

The Webinar runs for 1.5 hours.

Apologies for some of the early or late times; it is really difficult to host one event which suits all time zones; we will record this presentation for those who are unable to attend.

Check your time if not listed above by using this link:

We hope to see you there!

Support people with dementia: Donate to DAI

Become a DAI Associate or Strategic Partner today

Volunteer for DAI




  • $US 5.00 covers the average cost of one of our monthly bank fees
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  • $US 120.00 covers the average monthly cost of the MailChimp subscription
  • $US 400.00 covers the current cost of 3 months of website management fees


Sunday Musings – 20 January 2018

The smokescreen of the playground politics of Brexit continues to mask the disability rights abuses prevalent in the UK.

We now have the possibility of a second referendum, for gods sake, get on and sort this mess out, one way or the other.

If the result of the first referendum can’t be honoured, who is to say the result of the second one will be. Do we keep having them until the media is happy with the result.

Get a grip May and Corbyn, there are too many other things going on that need sorting out. People are dying and their rights being abused whilst 650 MPs act like Infant School children acting out in the playground.

We have remainer May giving sound bites about respecting the result of the Referendum, playing political football with people’s lives

political football

and leaver Corbyn peering over the wall of decision, generally on a Wednesday at PMQs, like a wartime Chad,


procrastinating, before retreating to obscurity,


whilst there only claim to fame will be destroying our once great Democracy and leaving us with a fractured society


On a more pleasant note, on Monday I was on BBC Radio Sheffield with Donna Chadwick from Young Dementia UK talking about the monthly New Young Onset Dementia Support Group in Sheffield facilitated by Young Dementia UK, the next one now being on the 13th February 2019.

You can hear our interview here

The Sheffield Dementia Strategy consultation finished on Friday but I understand that the CCG has been asked to extend the deadline as it was poorly advertised and there are still many wishing to take part. Hopefully the CCG will make an announcement in the next few days.

With over 7,000 living with Dementia in Sheffield, I am sure only a small minority have had the opportunity to take part. I wonder how many in Care Homes in Sheffield have contributed in line with Article 29 of the UN CRPD.

In The News

Thanks to Nigel Hullah for sight of this article

“Changes to mental capacity safeguards – intended to protect hundreds of thousands of vulnerable people – will hand care home managers and private hospitals far too much power, the government has been warned.”

Mental capacity changes give care homes too much power, critics say

Twitter Chat


The 3 Nations Dementia Working Group Twitter chat restarted after the Christmas break.

It starts from 8pm GMT this Wednesday evening.

Feel free to join in using the hashtag #ask3NDWG



Peter Berry’s 81st Weekly YouTube Video

Stephen Tamblin’s 36th Weekly Facebook Video

You can also catch Stephen’s 6th YouTube video

Janice Swinks Facebook Video

Betsy e Wurzel’s Caregivers Facebook Video


“We have a system which has committed all its funding in total ignorance of dementia, in a society which fears dementia above every other disease, and which seems unable to tear itself away from ‘what we’ve always done’.”

George Rook’s blog titled Visions that hide reality


Behaviour Change Ahead ? – Night Time

People living with Dementia may have problems sleeping or increases in emotional responses that begin at dusk and last into the night that is generally known known as Sundowning.

Susan Macaulay’s article talks about 10 reasons people living with dementia get up in the night, and what often happens when they do

The Alzheimer’s Society states:

For example, people may become more agitated, aggressive or confused. This is often referred to as ‘sundowning’. This pattern may continue for several months and often happens in the middle and later stages of dementia.

Sundowning may be caused by:

  • disturbance to the 24-hour ‘body clock’ that tells our bodies when to sleep, caused by the physical changes to the brain
  • loss of routine at a previously busy time of day
  • too little or disturbed sleep
  • too little or too much light
  • Reduced lighting and increased shadows causing people with Alzheimer’s to misinterpret what they see, and become confused and afraid
  • Reactions to nonverbal cues of frustration from caregivers who are exhausted from their day
  • Disorientation due to the inability to separate dreams from reality when sleeping
  • Less need for sleep, which is common among older adults
  • prescribed medication wearing off
  • medications that worsen confusion and agitation
  • lots of noise
  • other conditions such as sight or hearing loss.

Sometimes you might think of the person’s behaviour as ‘sundowning’ and not realise that they’re actually trying to meet a need. For example, the person may be trying to communicate rather than behaving a certain way just because it’s late afternoon. Always consider what other reasons there may be for a person’s behaviour.

“A person with dementia may keep getting up during the night and may become disorientated when they wake up. They may get dressed or try to leave the house. This might make the person tired during the day and they may sleep for long periods, which might be very stressful for you. The person may have problems during the night but not realise they’ve had them.

Dementia can affect a person’s sleep patterns. This is separate and different from normal sleep difficulties that come with getting older. It can cause problems with the sleep-wake cycle and also interfere with the person’s ‘body clock’. Disturbed sleep can have a negative impact on a person’s wellbeing (and those living with them). The tips below may help.

Better sleep strategies from Dementia UK

  • Firstly try to establish the cause of sleep disturbances.
  • Consider the environment and try to minimise noise levels and use of bright lighting.
  • Check if the temperature is uncomfortable i.e. too hot or too cold and adjust the persons bedding as required.
  • Night/day clocks can be used which help clearly indicate that is night time,  make sure they can be easily seen from the person’s bed.
  • Low level light or night lights can help the person find the bathroom and promote orientation.
  • If the person is away from home and in an unfamiliar environment, try to put familiar things in sight such as photos or prized possessions. This will make them feel more secure.
  •  Think about  food and drink; some people like to have a small snack before bed but heavy meals and caffeine based drinks should be avoided prior to sleeping.
  • Find out about toilet habits; ensure someone has been able to use the toilet prior to getting into bed.
  • If the person with dementia uses continence aids ensure they are appropriate for night time and are fitted comfortably.
  • Soft music and relaxation tapes can help the person get to sleep but always consider their own individual tastes, did they have a favourite album they found relaxing beforehand?

Other things to consider

Sleep disturbances may be a stage that the person with dementia goes through which will subside and settle over time. As dementia progresses people tend to sleep more. If problems persist then medical advice should be sought. Most importantly please discuss concerns with the GP so that any preventable or treatable reason for the sleep disturbance is identified and treated.


Purple Angel bespoke MP3 Music Players for People Living with Dementia.

Hiya all, please share this with every care home manager/carer/family member, activity coordinator / Nurse /hospital you know. This is all the information you will need in one place
Research has proved that music lights up more parts of the brain than any other activity known to mankind. If that’s not enough, some research in the USA says that the receptor in the brain that receives the music signal is never affected by dementia.
The MP3 music players we design are bespoke to the individual. We ask family and close friends to tell us 10 or 12 absolute favourite songs for the person with dementia. With our players every song will be a favourite.
We found that, by placing the MP3 headphones on residents with dementia intermittently during the day, their brain activity is stimulated and switches on all kinds of emotions – even bringing back the ability to converse in some cases. We have found that whilst the music is playing they can remember where they heard the music, what they were doing at the time and possibly in some cases how they used to love playing a musical instrument. It is without a doubt amazing to witness.
The other benefits are – when this is done no less than 30 minutes prior to mealtimes – they start to enjoy themselves, move about, sing along and feel more like eating and drinking. There is no reason whatsoever why they can’t also take meals whilst listening to music in their earphones.
The MP3s are small in size and the earphones are comfy, they are not just earbuds but the wider cushion effect earphones. These must be monitored by staff if clients are prone to throwing things or become very fidgety or distressed. This is NOT a one size fits all and we do not claim success every time but we have always worked on the theory that if it works for just a few people and helps them have a better quality of life, it is worthwhile. We have been working and collating evidence on this for the last few years and have had some incredible results and feedback.
Purple Angel can deliver this for free because we raise funds for it. The problem: The personal MP3 players have become so popular we are being inundated with orders so the cost to other establishments such as Memory Cafes; GP waiting rooms and Hospitals will be £30 per player. At the Purple Angel, we will continue to provide as many as possible free, but please help us to fundraise for this much needed cause! For more details please email:
Jane Moore: 01840 212 780 or
Norman McNamara: (please note the 2 rr’s!)
Before this lady was given the MP3 all she did was……………….
“Sit and stare into space “
“As QUOTED by her Granddaughter “
Please watch these two videos, Each ONLY a few secs long,
Please contact me for more information on (Two rr`s in norrms please)
REPORTS from a care establishment:
We have had 13 MP3 players with personalised music and headphones. Out of the 13 residents, we have seen positive changes in 11 residents and some unbelievable changes that have astounded us. For one resident that the MP3 player did not work for, we gave it to another resident not eating and drinking and spending most of the day asleep. This resident is now alert, eating and drinking.
We have 2 residents who were on end of life that have come back to life since the introduction of the MP3 players.
What we have seen residents speaking more, residents who never communicate verbally have been speaking. Residents have been putting on weight and have been much more alert.
Staff have been so excited by the results they have asked us to request more MP3 players for other residents. Families who have seen the reaction of residents listening to the MP3 players have asked if we can get them for their relatives.
The difference the MP3 players have made has to almost be seen to be believed. With BG (Da Vinci) who was approaching the end of her life, not accepting personal care, not eating or drinking and was very thin. To see her now right from the moment she had her MP3 player – singing, dancing, smiling, talking, eating and drinking and has gained some weight. Every day I see her, I still cannot believe the change.
The next logical step was to try and help those with dementia who visit A+E and also possibly those who have to stay in Hospital for a short time. The above way of doing things could not be done because of timescales and limitations to the right information about the person, so, with the help and agreement of the Wonderful Torbay Hospital we have decided to trial these in three departments within Torbay Hospital but it will be approached a little differently, please let me explain.
Imagine if you were sitting in A+E and the loved one with you was becoming very agitated as we all can (please remember I have dementia myself) and you had some music to take their mind off things for a while handed to you by a member of staff (To return of course) Or if you were a nurse at your absolute wits end (We are ALL only human after all) because a person with dementia is pacing, or agitated, or worse, on your ward and you had one of these at hand to try and calm the situation?
The evidence I have collated when I have asked about this idea on social media was most were in favour of trialling this and just a couple were worried it may not suit some. And I have to say I agree with all views. As we know from the home based MP3s not all work and some will not tolerate the noise from the music or indeed having anything on their heads.
First of all the headphones will be disposable and changed on every occasion because of health and safety. Then the music uploaded to the two MP3 players and will also be of a different format. There will be 25 songs/ tunes instead of the usual 12.
The Mp3s for the hospitals are different in so much that they are not bespoke and personal to the patent as it’s such a fluid situation but are picked out according to an age range. Now, this wasn’t done just by myself, I am so lucky to have so many friends on facebook etc. I asked each and every one between the ages of 55 and 75 what their TOP THREE all-time favourite songs were. I can promise you I had over 1,000 suggestions and had to dwindle it down to just 50, which is 25 tracks for each MP3. One Mp3 will be for those aged 55 to 70 years old and the other for 70 years and older.
25 Songs For Hospital MP3 Aged 55 to 70 years old
1. We Are the Champions – Queen
2. Bridge over Troubled Water – Simon and Garfunkel
3. Pretty Woman – Roy Orbison
4. Sweet Caroline – Neil Diamond
5. Here Comes the Sun – The Beatles
6. Lying eyes – Eagles
7. Delilah – Tom Jones
8. Half Way To paradise – Billy Fury
9. Baker Street – Gerry Rafferty
10. Heard it Through The Grapevine – Marvin Gaye
11. Sitting On The Dock of A Bay – Otis Redding
12. Wind Beneath My Wings – Bette Midler
13. Stand By Me – Ben E King
14. He Ain’t Heavy, He’s My Brother – The Hollies
15. Wonderful World – Louis Armstrong
16. A whiter shade of pale – Procol Harem
17. Walk Of Life – Dire Straits
18. Unchained Melody – Islay Bothers
19. Don’t Stop Me Now – Queen
20. House of the rising sun – The Animals
21. Angels – Robbie Williams
22. That’s Amore – Dean Martin
23. Que Sera Sera – Doris day
24. In the Summertime – Mungo jerry
25. Living on a prayer – Jon Bon Jovi
25 Songs For Hospital MP3 70 years and over
1. You’re My World – Cilla Black
2. You raise me up – Josh Groban
3. Jailhouse rock – Elvis Presley
4. A whiter shade of pale – Procol Harem
5. In dreams – Roy Orbison
6. Over the rainbow – Judy Garland
7. My Girl – Temptations
8. I remember you – Frank Ifield
9. Half Way To paradise – Billy Fury
10. Coward of the county – Kenny Rogers
11. When I Fall In love – Nat king Cole
12. Blueberry Hill – Fats Domino
13. Peggy Sue – Buddy Holly
14. Rhinestone cowboy – Glen Campbell
15. Love me tender – Elvis Presley
16 Mr. Bo jangles – Sammy Davis jnr
17. Build me up buttercup – The Foundations
18 Apache – The Shadows.
19. The twist – Chubby Checker
20. Itsy Bitsy Teeny Weeny yellow polka dot bikini – Brian Hyland
21 Green green grass of Home – Tom Jones
22. Shake Rattle and Roll – Bill Hayley and the Comets
23 In the Mood – Glen Miller
24 Those were the days my friend – Mary Hopkins
25 Spirit in the Sky – Norman Greenbaum
” We have been trialing the use of MP3 players for patients with Dementia, Cognitive impairment or indeed those patients who may find the clinical environment distressing as ways of providing comfort and distraction.
We have rolled this out across two of our Emergency Assessment Units and our Emergency Department.
Everyone involved with this project from the Nurses to the patients and their carers has seen the positive effect this intervention can have. Whilst we have been very mindful to ensure these are always appropriately used and their use monitored to ensure it is having a positive effect the overwhelming opinion is that these have been really beneficial.
A confused man who was trying to get out of bed and was getting distressed was given the mp3 PLAYER.
The result was amazing, he has been singing, dancing in the bed, and had a little tear. He said ‘here’s one for you Sandra’ to one song.
It has been lovely to watch.
We have used a number of these on EAU3 now and they have been great.
“A distressed patient who had Learning difficulties was really upset by the bright and busy environment in our Emergency Dept. We gave him our MP3 players and his ‘face just lit up’ he was singing and clapping and his carer was amazed at how calm and reassured he was.”
Purple Angel Music MP3s feedback
Feedback- September 24th, Bodmin Hospital- Anchor ward/Teresa Gamon
I have now used the MP3 players with two patients on our ward. Both of whom are suffering with dementia. Purple Angels and I had decided that initially it would be best to simply have two on the ward to use and gather feedback with. I have purchased a small notebook to keep this in and have been also provided with many pairs of disposable headphones I have given to the two patients to have in their rooms/bed space. One MP3 player has been uploaded with general music for people aged over 70, and the other for the over 55’s.
I hope to someday fundraise for a few bespoke players and have the time on the ward to get the families involved in choosing the music for their loved one.
Last week during our monthly ward meeting, I presented this project and my hopes for it to my colleagues. I also provided Purple Angel’s pamphlets for them to peruse at their leisure. We have decided to lock them away in one of the locked cupboards in the treatment room so they will be safe, yet accessible. I have also reached out to the ward manager on the other general medical ward in our hospital Harbour, and hope I can present this to them this upcoming week. If they “bite” then I will be approaching the kind folks at P.A. for another set up for their ward, as I’m not working there. I hope to possibly find another person passionate on Harbour to take it on for them and manage the feedback on that ward. Eventually I hope to take this wonderful project over to Garner ward which is the dementia ward, so we know they could use them!!
Here is the feedback I have received so far:
P.G. aged 88
“It’s lovely darling”
“Can I borrow this for a little while”?
“Thank you very much darling”
Agitated at first but continued talking through the music but happy to have it on. Tolerated for 10 minutes then said to “Wait until after tea”.
Later that evening…..
Patient very aggravated- MP3 player on- patient settled.
“Enjoying the music”.
Tapping his hand on the arm of the chair. Listened happily for quite awhile.
Called out the entire time while the ear phones we in and music on but didn’t want me to turn it off.
Seems to be enjoying the music and it made him less agitated this time. Had it on for hours this time and did not want me to turn it off or take the earbuds out all through this daughter’s visit.
Offered it to him but he declined this afternoon.
D.S. aged 90
Turned the volume way up for him and he seemed to enjoy it.
“Not bad” (but then seemed to calm and relax….lulled to sleep for approx 40 mins when usually he is trying to get up and antsy at all times) Eventually he awoke and took the earphones out and didn’t want to continue listening.
Offered him the player again but he declined at this time, “Thank you”
MP3 Outcomes – Project The Power of Music Appleby House Care Home
We have had 13 MP3 players with personalised music and headphones. Out of the 13 residents, we have seen positive changes in 11 residents and some unbelievable changes that have astounded us. For one resident that the MP3 player did not work for, we gave it to another resident not eating and drinking and spending most of the day asleep. This resident is now alert, eating and drinking.
We have 2 residents who were on end of life that have come back to life since the introduction of the MP3 players.
What we seen residents speaking more, residents who never communicate verbally have been speaking. Residents have been putting on weight and have been much more alert.
Staff have been so excited by the results they have asked us to request more MP3 players for other residents. Families who have seen the reaction of residents listening to the MP3 players have asked if we can get them for their relatives.
The difference the MP3 players have made has to almost be seen to be believed. With BG (Da Vinci) who was approaching the end of her life, not accepting personal care, not eating or drinking and was very thin. To see her now right from the moment she had her MP3 player – singing, dancing, smiling, talking, eating and drinking and has gained some weight. Every day I see her, I still cannot believe the change.
We cannot thank Norrms and Purple Angel enough, you have brought so much joy to so many residents, their family and the staff.
Shona Bradbury
Home Manager Appleby House, Epsom, Surrey
Please see below for more comments from care staff and family who have used the MP3 players:
DZ (Picasso) – DZ is a lovely lady who lived in Germany, she can be very quiet and will decline to join in activities or interaction he likes to read but is becoming sleepier. Since receiving her MP3 player with German folk music on she seems happier in herself especially whilst she is wearing her headphones, her appetite has improved slightly and she’s more alert at the table.
JG (Van Gogh) “JG can be anxious at times when in a crowded place or with lots of noise. She sits and sings along to her MP3 player for shorts bursts of time, she is happy whilst they are on and will sing at the top of her voice.” BS, carer
Evaluation – There is not a lot of evidence to suggest that it is helping to ease her anxiety at the moment.
EH (Renoir) – EH is a lovely lady who enjoys art sessions and she loves to read, she came from a big Italian family however she has stopped communicating verbally as much as she used to and can be quite sleepy. Her daughter chose all her favourite Italian classical songs for her player and the effect when she is listening to her music is truly magical, she sings along to the songs with a big smile on her face.EH is being more alert and active, she is more aware and communicating with longer sentences and her mood is lifted”. DS, carer
(Email message from EN Daughter and Granddaughter)
“Dear Shona, I would like to say how much my mum’s speech and memory appears to have improved since she has had the MP3 player with her favourite Italian songs. She has been singing along with all of the songs and it has definitely stimulated her into remembering once again the music she grew up with in her Italian family and it makes both myself and my daughter particularly happy knowing how much it has enhanced her wellbeing, Thank you so much for choosing my mum to be recipient of such a simple yet effective gift, with our best wishes.” Daughter and granddaughter
DS (Renoir) – DS is a lovely lady who is very emotional many times throughout the day and she becomes anxious for her family. The MP3 player has changed DS mood dramatically. She is less tearful and when she is feeling emotional then the headphones will brighten her mood and this last for a considerable time. This has made such a change to her wellbeing on a day to day basis. DS also likes to be sung too, especially Patsy Cline – Crazy, she joins in and it makes her happier”. DS and M carers
JS (Van Gogh) – “JS was very quiet and had lost the ability to engage in conversation, since wearing her headphones she as an awareness and is now speaking words and she is making eye contact and smiling and answering yes or no questions. JS seems happier and is ready to smile when engaged”. BS, carer and CS, team leader
(Email message from JS daughter to Norrms)
Hello Norm,
I would just like to say thank you for taking the time to put music on to an I pod / MP3 player for my mum. (JS)
My mum has lost the ability to speak her communication is limited she does say some words but her facial expressions say it all she smiles with her eyes and she still laughs and rolls her eyes, but it has been getting less and then she was picked to have one of the I pods you are doing and it has been so amazing we sit with her while she has the headphones on and you can see in her face how she is really enjoying the music and that it is sparking memories. She taps her foot to the beats and she looks and smiles she also starts to try and talk you can see it is making a difference she may not be dancing in her seat or trying to sing but you can see her really listening and taking it in,
I love sitting there and holding her hand while she just listens she will look at me she is very tactile and the other day while listening she stroked my face which is so lovely as I miss my mum to talk to and to share with I feel like the mum and she is my child which all day long I will look after her and do anything for her she is my world she brought me into this world and she looked after me but I do miss her.


Hearing Test and Hyperacusis – Part 2

Recently I was back at the Royal Hallamshire Hospital for a follow up appointment at Audiology.

I had been previously for a hearing test and had some moulds taken.

I went to the wrong reception desk but finally checked in and it wasn’t long before Claire arrived and I was seen.

The previous moulds weren’t big enough, so I had to do some fresh ones first and it would be a few more weeks before I could try out the hearing protectors.

In the meantime, Claire asked me to try out some pink noise therapy, to see if it could desensitize my hearing and reduce the Hyperacusis.

She played some white noise through a speaker and then some pink noise, The white noise seemed a harsher sound so I agreed to give the pink noise a go.

The therapy uses a digital hearing aid but with the hearing aid part switched off and she showed me how easy it was to change the settings on a digital hearing aid. Claire then turned on the pink noise in the device with it set at a low level to start with..


Next Claire measured my ear for the right length tube and fitted the hearing aid to my ear.


I could just about hear the pink noise but it wasn’t distracting and Claire offered to do the same for the other ear.

I wasn’t sure about have one aid in each ear and opted for an additional tube so that I could swap ears every few days.

Claire gave me some spare batteries and a card if I need to get any more and we were done for a few weeks and I made my way home by taxi.

Note to Medical Professionals

Poorly adjusted digital hearing aids can lead to people living with Dementia not wearing their hearing aids and also appearing confused when they are not or having uncharacteristic emotional responses.

It is simple for Audiology to adjust a digital hearing aid and can be done by trial and error if there is a communication problem.

Not referring a person with Dementia because they wouldn’t understand is unacceptable.


New Dementia Cafe in Sheffield – Open Tomorrow.

A new Porter Valley Dementia Cafe opened on the 6th December 2018 for patients of the 5 GP practices in the Porter Valley area.  This cafe has been funded by the NHS Sheffield Clinical Commissioning Group (CCG) for patients living with Dementia in the Porter Valley neighbourhood of Sheffield.

It is held at the Bents Green Methodist Church 172 Knowle Lane, Sheffield S11 9SJ.

Cafe’s take place on the first and third Thursday of each month.

It is open from 2pm to 4pm.

dementia cafe poster

dementia cafe


Announcement – New Young Onset Dementia Support Group in Sheffield – Starts Tomorrow


Earlier in the year, I contacted Young Dementia UK about the lack of support for people living with Dementia under the age of 65 and their care partners and families in Sheffield.

Then I was on the interview panel that appointed a  Young dementia UK co-ordinator for Sheffield.

It is so important for people living with Dementia to be involved in developing new services.

I am pleased to tell you that YoungDementia UK is launching a new monthly group starting on the 16 January 2019 for people living with Young Onset Dementia who live in the Sheffield area.

It will take place every month at

Graves Health and Sports Centre
Bochum Parkway
S8 8JR

The 16th January and 13th February group will be at 1.00-3.00 pm and will provide an opportunity to feedback what activities you would like at the group, what times and dates are best and how it should be formed.

It is chance to meet new people, try new activities and access information about young onset dementia.

Download a poster about the group here.

For more information please contact our Group Coordinator, Natasha Wilson at

Additional Funding

As Sheffield is our 4th largest city and it is quite a way from the north of the city to Graves Health and Sports Centre I am seeking additional funding for a second group in the north of the city.

Any kind soul reading this that may be able to help could contact Natasha for more information.

Note for Professionals and Organisations

I would hope that people receiving a diagnosis of Young Onset Dementia, would be referred by their Neurologist to the group, at the point of Diagnosis where appropriate, via Natasha Wilson.

Associated Health Professionals who identify someone who would benefit from being included should also refer people along with other medical professionals the council and other organisations.

Equality of treatment and services regardless of condition is a right set out under the The United Nations Convention on the Rights of Persons with Disabilities (CRPD)

For more information please contact our Group Coordinator, Natasha Wilson at


Sheffield Museums – Dementia Cafe’s

The dates for the upcoming Sheffield Museums Dementia Cafe’s and venues are as follows:

15 January 2019, 1.30 – 3.30pm, Millennium Gallery

12 February 2019, 1.30 – 3.30pm, Kelham Island Museum

12 March 2019, 1.30 – 3.30pm, Weston Park Museum

16 April 2019, 1.30 – 3.30pm, Millennium Gallery

14 May 2019, 1.30 – 3.30pm, Kelham Island Museum


Sunday Musings – 13 January 2019

On Monday we finally  had the Long Term NHS Plan published with a mythical extra £20bn for the NHS.

By Thursday:

Government cuts real terms NHS spending, but boosts cash

Can’t wait to see the promises in the long awaited Green Paper on Social Care, which has no chance of being enacted in this Parliament.

Smoke and mirrors you might say to detract from the damming UN report from Sir Philip Alston.

On a more positive note, the 13 commitments to the Sheffield Dementia Strategy were released to the media this week.

On Thursday, at a public meeting of the Sheffield Clinical Commissioning Group, Governing Body, Tim Moorhead the head of the CCG, Kath Horner chair of Sheffield Dementia Action Alliance, Nicola Shearston from Sheffield City Council and myself all stated the importance of the new strategy and the need for an integrated pathway involving all stakeholders in Sheffield.


The 3 Nations Dementia Working Group Twitter chat restarted after the Christmas break this week with a chat about “Dementia as a Disability”.

It starts from 8pm GMT on a Wednesday evening.

Feel free to join in using the hashtag #ask3NDWG

Fellow blogger Gill rights about Wednesday’s subject today in her blog :

Dementia: a disability?


Peter Berry’s 80th Weekly YouTube Video

Stephen Tamblin’s 35th Weekly Facebook Video

You can also catch Stephen’s 7th YouTube video


“I can imagine it is very hard to be friends with someone who is losing their mind. Hard to be friends with someone who one minute makes sense, and the next may be babbling incoherently.”

Minna’s blog titled Solitary confinement in the New Year