An exploration of the UK unpaid carer's world

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The charity doesn't need to be identified yet and it will be referred to as BT.  Nothing telephonic about it.  BT means the local day care venue, not the charity unless specified.


The adults within the project can be said to be people with profound and multiple learning disabilities. more  more

This line and the next have been used on the Songs and music for adults with special needs Home page here


Within the thirteen adults, only two of them could participate in  a formal discussion  . . .  to discover their wishes, checking interpretations   link needs to be revised

  1.  Differing levels of comprehension
  2.  Differing levels of mobility
  3.  Beating and tapping
  4.  BT operates a day care centre - only
  5.  Themed sessions
  6. "There's enough provision already"

1  Differing levels of comprehension

1 & 2 go together in terms of inevitability.

The participants can be described thus.  Eight is the average attendance:

     A  Two arrive each day under their own steam.  One of these has near-normal conversation.  The other could 
         dominate proceedings if allowed to.

     B  One spends all the time asleep.  Another is entirely motionless and expressionless.  One is completely deaf.

     C  Two react to the output quite well and in different ways.  One of these sings along with, occasionally, 
          surprising results - 1/Ci.  The other has a loud voice and picks up high-pitched lyrics and yells a main word             or two. - 1/Cii   Fond of yodelling songs.

     D  One repeats what I or an organiser say.  Helps with the tea.  

     E  One can only sit but jerks (not used as a technical term).  Hyperactive response to very strong rhythm.

     F  One is virtually inactive and expressionless and then gets up and reorganises the chairs.  (Seen once.)

     G  Two or three float in and out.  In  the main, there's more two-way interaction.  One cannot ask questions but               they appear to be able to arrive each day under their own steam.  


On the Home page, it says:

Although this representation of a totem pole meant something to one or two of the adults, one just doesn't know if any of the others understood it.

That points to a research need.  Meanwhile, I proceed on the basis that nobody knows what the people within the overall category here understand.   Members of the public sympathetic?   If Joe Bloggs failed to recognise Stephen Hawking, his carer would be asked - "Does he take sugar?.    (Might use these three lines on a public page.)
 
Source third photo from the top here.


2  Differing levels of mobility

BT has determined that the participants remain seated.  Although I say that 1 & 2 go together in terms of inevitability, that applies to the heading - Differing levels of mobility.  I had hoped that the exercise songs included could involve occasional standing for some of the participants.  

BT has encouraged the exercise-songs ideal.  In practice, it does very little to optimise it.



3  Beating and tapping

We use the average of eight regular participants

3.1
None within this group would be able to sing or clap in time here.  Perhaps six could handle a tambourine or similar such as jingles.  

3.2
Perhaps six could beat a drum.  Perhaps one would be in time with the music.   Perhaps beat is the wrong word for many. It implies regularity even if  different from the beat/rhythm of the song or music.   Hitting the drum (also tambourine) could vary.  Some might hit it more or less normally while others might demolish it if  not well constructed. 

3.3
Then there is tapping.   Some might tap it more or less normally while others might scarcely touch whatever is in their hand. 

3.4
It's difficult to run the songs and observe  at the same time.  Mainly, I assess reaction to specific songs and music and stay or move on.  Any repeats from week to week can vary so much.  

3.5
However, every sessions ends with a well-enjoyed rendering of Who let the dogs out.  BT doesn't permit use of video in the sessions.  Youtube for more than one or two songs would be impracticable anyway.


4  BT operates a day care centre - only

It is not interested in developing individual capability.  I have suggested that 1/Ci is given extra time but BT is not interested.  However, that is the local centre.  I'm convinced that the CEO is unaware of what is going on.



5  Themed sessions

Preamble

Music therapy might be especially suitable for clients in mental health care who have difficulties engaging in verbal treatment. 

1.5.1 here


5.1

I haven't started research into any aspect of this work with BT, least of all on whether there is any point in including themes.  Are themes more of a convenient way of grouping the output?  Are they a way for the organisers to feel that the sessions are planned and to believe that a lot of good is being achieved?   Are we all just following a regimen?  Is enough being done to establish what is beneficial and whether that can be measured?

5.2
Themed sessions can operate with or without costume/uniform.   

5.3
It is my firm belief that the visual aspects are just as important as the audio aspects.  BT and I part company again (No. 3).  However, he who pays the piper . . . . . (I am one but no more of my websites to look at.)

5.4
The following does not amount to criticism:

5.4.1
Many services are not well prepared to support older people with learning disabilities BILD source - No. 23 here


5.4.2
It is important to listen to what older people with learning disabilities and their families tell us is important to them  ibid  21

The obvious and  main point is that the participants cannot respond to questions such as "Did you enjoy that song/session?"  Most of the ones I have seen do not have families (Item 7).

More in the list can be commented on in the present context. 


5.5
While looking at the BILD page, I wonder if Item 7 Future generations of older people with learning disabilities will have more complex needs is explained elsewhere.



6  "There's enough provision already"

6.1

In discussing the situation with only a few in the field, the reaction is "  Why are you going to such lengths?  Have you (ergo - why haven't you?) heard of "Singing for the Brain" ? ".  "Yes thanks" (and let's talk about something else.).  It's for closer-to-normal people as the video here makes clear.  Another video makes the point even more.  If I could achieve arm-swinging, never mind in time with the music,  with "my" group it would be more than a breakthrough.  video  The participants can communicate and some are accompanied by spouse etc (4.4.2 above). 

6.2 

"Be prepared to…deal with the fact that some people will always think you do nothing but waft a tambourine around all day. You’ll use a tambourine some of the time, along with the piano, guitar, your voice and whatever else you can get your hands on, but you’ll be using them in strategic ways to encourage and support people of any age and walk of life who face additional challenges to have experiences and make connections with themselves, other people and the world around them."   Nordoff

6.3

" I would take the song sheets home after the sessions and we would sing them at home."  Jean Bundock   here  enough said

6.4
The benefits etc of singing and music are included on the left of the page here.  However, it needs extending to accommodate our people. The graphic under Group 3 on the right comes from the source of the following quotation:

"The power of music, especially singing, to unlock memories and kickstart the grey matter is an increasingly key feature of dementia care."  more 

Within what I am doing, there is very little singing.  People in 6.1 would wonder what it's all about.  My answer - in brief:

    6.4.x 
  1. It's part of the bringing them together within common purpose activities
  2. Combining audio and visual elements with the aim of maximising individual ability to respond
  3. Improving concentration, memory
  4. Exploring and expressing feelings non-verbally
  5. Encouraging intentional movement, developing motor skills
The source of 6.4.2 to 6.4.5 is at 1.3 here



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