An exploration of the UK unpaid carer's world

                                                                          

                   DMCs were expanding across the globe - slowly - until now in the UK, with your help 

                                                                The graphic is an Italian DMC poster.


A DIY Dementia Meeting 

Centre for your local 

community 


5 Feb 2017

Proof that DIY works, via the Ross Dementia Meeting Centre - Home page here 




24 Nov

Dementia patients should not be hidden away here




10 Nov

Stigma and discrimination - a NHS page here

 


15 Oct

Recommended bare-bones text  here


Under starter's orders here 

DIY DMC Business Plan here     


13 Oct

A meeting attended by carees, carers, volunteers and staff at the Leominster DMC was told that it needs £80,000 to run it per annum.  

More at 1.1 below.


11 Oct

Herefordshire DFCs  here

 

8 Oct

Dementia Friendly Communities     here


Activities - purchases and DIY  here   


Meetings  here   


Dementia Facts  here


Brain exercises  here 


What is dementia like?

http://www.caredementiashow.com/virtual-dementia-tour


If you are an early reader with time to spare, head for the Care & Dementia Show here.


Update 3 Oct  


New pages at   25  27   29 


It predates DMCs.


Update 27 Sept  Page summary here. 


New page at 19


If you are an early reader with time to spare, head for the Care & Dementia Show here.

-------------------------------------------

      Contents


          Preamble

  1. Introduction
  2. Background info with which the initial team ought to become  fluent   
          Page summary here. 



  • This is a private, independent, unfunded and experimental site.  One of these sites  costs about £5 per year so it is limited in scope.

  •   more at "1 Privately-sourced website" here

Home page 

  1. Navigation page here

  2. Dementia Meeting Centres - synopsis  - here

  3. Recommended bare-bones text  here

  4. Under starter's orders here 

  5. DIY DMC Business Plan here  

  6. DIY DMC FAQs here

  7. DMCs- pitfalls and their minimisation here

  8. Your DIY  DMC - ways and means here

  9. Activities  here

  10. Activities - purchases and DIY  here 

  11.   Meetings  here

  12. Volunteers here

  13. Toss and Talk balls here

  14. Pics for DIY DMC publicity here

  15. Promoting DIY DMCs in Gloucester here  

  16. Reminiscence therapy  here 

  17. Making our health and care systems fit ..  here

  18. Poetry here 

  19. Do GPs understand dementia? here

  20. Dementia Facts here

  21. Brain exercises  here 

  22. Dementia Friendly Communities here

  23. Herefordshire DFCs  here

  24. Stigma and discrimination - a NHS page   here

  25. Recycled songs Home page here

  26.  Carers who have no one to turn to here 

  27. Dementia patients should not be hidden away here



Preamble   

  1. The huge difference between a daycare centre and a  Dementia Meeting Centre - DMC - is that carers participate in the wider aspects of the care process which is person-centred.  This, essentially, is treating the person, the caree, with dignity and respect: understanding their history, lifestyle, culture and preferences: and looking at situations from the point of view of the person and not a set of symptoms.
  2.      
  3. The other benefits for carees include: higher self-esteem, reduced symptoms of depression, enhanced mood and behaviour, delay in admission to residential care as well as evidence of carers feeling less isolated and more supported. - more

  4. You will come to DMC history, the international DMC project and how England is interpreting it.

  5. The research aspect of the project is due to end in February 2017 when there will be published evaluation of it.  

  6. The project has been well-financed - 3 here  - but at the time of writing, there are only two DMCs and fewer than half a dozen in pipeline.

  7. The writer forecasts that there will only be four DMCs by February 2017.  They can take a year, as far as can be determined.

  8. Accepting that the first DMC in Droitwich would take a longer time, the project started in mid 2013 but the Centre was formally launched on 20th November 2015 here

  9. Leominster DMC opened its doors on the 1st February 2016. here

  10. Brecon, Hay-on-Wye, and Lutterworth are in pipeline - 2.3 to 2.5 here.  There may be more but unknown to the writer.

  11. The year referred to in 11 includes at least one public meeting, an Initial Meeting, an Advisory Board which may have met twice.  Additionally, there are Information meetings on dementia and other topics.  The year also includes obtaining funding.

  12. Given the logic of Alzheimer's Society and council funding bodies holding back until after February, the prospect of new DMCs obtaining such funds is low, to say the least. 

  13. But that is not a reason for giving up on new DMCs.

  14. Their first task for the team is to establish the need for a DMC in its locality. 

  15. The second task is to formulate a time-programme of the stages involved.

  16. The other aspect of programming is what will take place and when.

  17. The two DMCs run three days a week from 10 to 4.  The writer proposes a pilot project of six weeks, one day a week from 11 to 3 

  18. The team moves on to finding a sympathetic host.  The organising team may need to deal with insurance.  Having found premises, the team is 60% down the trail.

  19. The normal procedures of any new interest group including publicity, who does what, initial finance etc follow.

  20. The equipment needed follows from what will take place.  The DIY principle applies when appropriate.  

  21. The essence of DIY is now and not never.  Run, provide worth to participants, and produce simply-put justification for low-level funding in the first round.  You will not say that you are going to do this and that.  You say you are doing it within worth to the participants couched in their terms.  


1  Introduction

i)

Review and revision of UK present fragmented and inefficient dementia care is long overdue. A new way of tackling the problem is being tested.  Holland has been running Dementia Meeting Centres for ten years years and their success is proven.  A UK project was started in the middle of 2013 and a report is expected in February 2017.      for ten years - 3/12 here    report  9/12

ii)

Some readers will have already skimmed several pages.   If you haven't seen the  DIY DMC FAQs, then click here

They are the key to your understanding of how a DMC works.  

iii)
The Dementia Meeting Centres - Synopsis page  -   read its Introduction here and latch onto "the too-few UK DMCs started since 2013".

iii)

That synopsis is the key to your understanding of WHY a DMC works.  Assuming that has been absorbed, and if you missed the more link, it's time now to click more.  

iv)

You won't have read every line and you have an overview of what needs to be put right. Now for the ABC.  If that's too much for you just now, end for the moment/day with a trip to 2.11.


  • A  The UK general public, commissioners, service providers, staff and professionals often feel ill equipped to know the best way to work with people with dementia and their families. 

  • B   Research and best-practice evidence about dementia care and support is not readily accessible and understandable. 

  • C   Skills to support people with dementia have not been a priority within professional training and education.
  •  
  • D   There is a need for multi-disciplinary and multi-agency support so that people with dementia can live well. 

  • There is also a need to listen to the opinions of people with dementia and carers who bring an expertise which no others can offer.

  • F  They are experts in their own right and to ignore them defeats achieving a realistic and balanced judgement about the challenges.   source

  • G  Although updated on 2 October 2016, the above underpins the scope of the UK arm of the international project.

  • H  Your DIY DMC will have the same foundation as any other.  Your building takes less time to build and there are different views from the windows. You are helping to improve B and C - in the long run.  E and F are the main girders of your building.

Contents of the remainder
  1. Rationale for the DIY approach
  2. You need to be sure that there is sufficient local need for a DMC
  3. You need to find suitable premises
  4. You need some start-up money
  5. You need a small team to share the tasks
  6. The team formulates aims, initial operational plan, 

1.1      Rationale for the DIY approach

Preamble

A meeting on 13 October 2016 attended by carees, carers, volunteers and staff at the Leominster DMC was told that it needs £80,000 to run it per annum.  It is shown on a later page that the DIY approach can run at much less cost.

That sum incorporates a research project into the validity of DMCs in the UK.  While one presumes that new DMCs will not be tied into it, there is no information on the topic.  

There was considerable disquiet within the meeting at the lack of clarity relating to what would happen if Leominster carers raised funds and paid them into the Alzheimer's Society. 

Four carers were named re attending the Advisory Board meeting on 25 October.  No info re time. Presumed to be at the Meeting Centre at 1900.


  1. Two UK DMCs are the outcome of an international project - IP -  to improve dementia care

  2. Its way of operating involves many formal meetings

  3. The process can take more than a year

  4. The IP UK arm reports its findings in February 2017  here    report  9/12

  5. It is logical that present funding bodies will not fund anything else until at soonest, April

  6. Which means your pilot project will depend on other resources

  7. They may include  companies/organisations with less experience of funding this type of project

  8. The ultimate rationale is to demonstrate that your pilot project is worthwhile to the participants couched in their terms

  9. The IP operates its DMCs three days per week from 1000 to 1600

  10. You could aim, initially, for a pilot project of one day per week from 1100 to 1500 

  11. The normal IP way of operating involves many formal meetings.  

  12. The process can take more than a year.  Included in that is finding the finance.  

  13. Because the IP project is  venture-based, potential stakeholders are told what is hoped to happen. 
  14.  
  15. You start under your own steam and as you gain momentum, interest will grow

  16. You will inform potential stakeholders what has happened, what is happening, and what will happen.  These all add up to innovation within an innovation   

  17. You are 60% down the trail because you have found premises and an operational team of dedicated, enthusiasts with the shared purpose of providing improvements in local dementia services within a much shorter time than the IP.  

  18. more


1.2    You need to be sure that there is sufficient local need for a DMC
  1. List your reasons

  2. Collect evidence - GPs*, CPNs, other healthcare professionals, but you may need to convince them

  3.                          past local press, carer support groups, simple questionnaires, door-stepping(?)

  4.                          post an exploratory article in the local press - take note of 1.5.6 

  5. Assuming the reader is a carer, your first port of call is your GP.  Do not assume that all GPs are dementia-fluent - more.   
  6.   
  7. Before seeing any GP, even any healthcare professional, you will have looked at dementia prevalence  
          * 
              Select your county source and then Show all practices. Work through surgeries in your                           catchment area. Multiply total patients over 65 with dementia by the dementia prevalence % 

              Dementia is a group of related symptoms associated with a decline of the functions of the                     brain. This includes problems with memory, thinking speed, understanding and judgement.
              add    
              
              source  If followed up - enter your town and keep going until you have found a surgery and clicked Dementia in the list

              GPs are your greatest resource (followed by other healthcare professionals).   Bear that in                     mind when you arrive at 1.5.1.



1.3    You need to find suitable premises
  1. Space for two dozen people  - 10 carees max, 10 carers max, 4 volunteers  

  2. A separate room for a dozen people -  one half in the big room, the other in the back room

  3. Toilets including disability toilet(s)

  4. Equipment storage

  5. Close to at least a mini-supermarket and, by initial consensus, a fish and chip shop  reason - 2 here

  6. Suitable car parking.  Although hens-teeth rare, some car parks allow seven hours for disability parking and £1 all day parking.  Coningsby Road  In contrast - Total spaces 163  - Disabled spaces 2  here  Write to your Council for seven hour disability parking and £1 all-day parking for your members and volunteers.
  7.  
  8. Local community transport may well be part of the consideration

  9. Look to your host re being constituted


1.4    You need some start-up money
  1. The team needs to formalise how the finance will operate

  2. You cannot accept donations or daily cash  until properly constituted.  The solution in the short term is to ask each carer and independent caree - 8.5 here,  to sign a statement that authorises you to handle their money.  

  3. Look initially to your host re 1.4.3 and handling daily cash from carers.  Perhaps the Treasurer, as appropriate, could help.


1.5   You need a small team to share the tasks
  1. Leader
  2. Legal aspects including being constituted and insurance
  3. Finance including 2,  personnel and equipment
  4. Other roles   
  5. Premises
  6. Publicity
  7. Activities  


1.5.1   Leader


1.5.1.1  GPs

  1. An urgent matter to deal with, of course, is the recruitment of team members.  

  2. Publicity is not something you rush into.  

  3. GPs come first.  Don't assume that they know all the dementia answers or even that they are dementia-friendly.  More at    -  Do GPs understand dementia?   here

  4. New networking may well be required.  Delicate networking.  That's why you are doing it.  Start after good discussion with the team.

  5.  GPs .. ..  Perceptions about dementia that were linked to their own existential anxiety and to a perceived similarity between people with dementia and themselves were particularly salient. source  (Good start!)

  6. General practitioners (GPs) play an important role in dementia care. Sufficient knowledge is one of the requisites for adequate dementia management, and educational activities do include knowledge transfer. There is no up-to-date measure of GPs' knowledge of dementia, . .  source

  7. Are you a dementia-caree carer?  If so, what discussion have you had with you GP?  Was it a matter of "She/he has dementia and I am referring to X." ?

  8. Did your GP conduct an/any initial test(s)?  The Short Portable Mental Status Questionnaire  may have been used.  here   If a UK version is unavailable , questions 7 and 8 are probably couched in terms of our PM. 
  9.   
  10. Another test is the GPCOG Screening Test here page 5 
  11.     
  12. You don't set out to be an expert.  Don't go empty-headed.

  13. Time to look at      3 and 8   What are the criteria for participation within your DIY DMC?  here

  14. If and when you step over the thresholds of other GPs, you will have made contact before. Networking and research results under your belt.  Good luck.

1.5.1.2  Other healthcare professionals should be consulted  -  3.6 here


1.5.2     Legal aspects including being constituted and insurance


1.5.3     Finance including personnel - when you get that far


1.5.4  Other roles 

  1. At least one of you will need the knowledge of a Dementia Champion who will present it to the rest of the team.  Meanwhile, there is part of the presentation here.  The second aspect of meanwhile is understanding the Five Things you should know about Dementia here.

  2. Useful within public meetings within 1.5.6  Publicity, but do not give a presentation in that context, of course. Beware of answering questions.  "During the induction day you will also get lots of information and resources to help you understand how to answer people's questions about dementia." here

  3. According to the direction you want to travel, other roles will emerge - more later


1.5.5  Premises

  1. See 1.3

  2. Start looking.  If lucky, have back-up in mind.


1.5.6  Publicity

  1. You have plenty to consider and organise before your first press-release   

  2. When ready, there is plenty of text to come

  3.  Heading 2 gives initial text for consideration later


1.5.7  Activities - 

  1. Which include some bought items and mainly DIY items

  2.  There is a page on the topic

  3. Decide how these activities will materialise



1.6    The team formulates aims, initial operational plan, evaluation procedure, Stage 2
  1. Evaluate the foregoing together

  2.                     Heading 2 below

  3. Decide what advice is needed

  4. Formulate


2     Background info with which the team ought to become  fluent   

        A - Follow-up text sources

        B - DIY DMC FAQs here

        C - Start thinking about publicity

Contents

  1. A DMC is an up-to-date version of a daycare centre 

  2. DMCs have been running in Holland with great success for twenty years

  3. Being faced with dementia has substantial consequences 

  4. Stigma - people are frightened of dementia 

  5. Stigma - lack of understanding that dementia is caused by a medical disorder

  6. Stigma -  fear of  'accelerated' nursing home admission increase public fear of dementia

  7. services are often fragmented

  8. DMCs reduce behavioral problems
  9. One last item

  1. A DMC is an up-to-date version of a daycare centre with important advantages. Carers leave their carees at the daycare centre in the morning and collect them in the afternoon without participation in the care process.  According to caree ability to remember, carers may not know what happened during that time.  There's a care-triangle of the caree, the carer and the  DMC as a cohesive and innovative way of dealing with the growing numbers of dementia sufferers. 

  2. DMCs have been running in Holland with great success for twenty years.  There are only two DMCs in the UK so far in Leominster and Droitwich and there are fewer than half a dozen in progress.  It will take a long time to reach the Dutch numbers of 125.  Such numbers can only be achieved by local leaders and residents giving every encouragement:  in your case , to an innovative local DMC project.  The successful DMCs in Holland are based on the principle that as carers know the most about their carees, they should be involved in the care process.  Few, if any carers, however, are involved in the management of  existing UK DMCs.  Until now.

  3. Being faced with dementia has substantial consequences for both people with dementia and their families. Various support services are available to support them in dealing with the consequences of dementia. However, it is often difficult for people with dementia and their carers to acknowledge having dementia and to ask for help. source 

  4. There is still dementia stigma: members of the public without knowledge or experience of dementia don't understand it.   “People are frightened of dementia, but I think a lot of that fear is based on the thought of – 'What if it happens to me?' "  “People have to be educated that when you have a diagnosis, you start on a different phase of your life and you start on a journey.  If you have the proper input along that journey and are assisted on that journey, life is not over. Life can be made just as fulfilling as it possibly can be, and that is what we need to do.  It is a bit like mental health issues, which used to be very taboo but people are coming round now. This is a mental health issue as well – it is a disease that affects the brain.”   here

  5. Most people are unaware of the fact that dementia is caused by a medical disorder and that the symptoms of dementia are the result of physical damage to the brain. This leads to inaccurate assumptions about its effects on the person and his or her family and negative stereotypes about how a person with dementia will behave. While public awareness of the existence of dementia has increased, that has not, as yet, led to a greater acceptance of individuals who are coping with dementia - page 7 here
  6. There is still dementia stigma; people are afraid to become dependent on others and fear 'accelerated' nursing home admission in particular. Therefore, they tend to delay asking for help risking overburdening informal carers,   source 

  7. In addition, the available services are often fragmented, making it difficult for people to find the services that fulfil their individual needs and preferences. As a result many of them experience unmet needs.  source 

  8. Research shows that DMCs reduce behavioural and mood problems of carees at lower cost than day care without family carer support, resulting in substantial economic savings.   DMCs make it easier for people to ask for help in a timely manner, thus maximising social integration and delaying the use of more expensive residential care. The DMC is a low-cost (added compared with conventional daycare) opportunity that can be supported by liaison with existing care and welfare organisations.   source  edited - no sources included

  9. One last item - -  read this highly informative story.


pagetop     A DIY Dementia Meeting Centre for your local community here

                    Navigation page   here

                    Your DIY DMC project contributes in a big way for your town to become a
                    dementia-friendly community here

                    UK Dementia Meeting Centres Home page  here