An exploration of the UK unpaid carer's world

• 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. 
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• B   Research and best-practice evidence about dementia care and support is not readily accessible and understandable. 
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• C   Skills to support people with dementia have not been a priority within professional training and education.
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• D   There is a need for multi-disciplinary and multi-agency support so that people with dementia can live well. 
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• E 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.
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• F  They are experts in their own right and to ignore them defeats achieving a realistic and balanced judgement about the challenges.   source
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• G  Although updated on 2 October 2016, the above underpins the scope of the UK arm of the international project.
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• 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.

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. Two UK DMCs are the outcome of an international project - IP -  to improve dementia care
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3. Its way of operating involves many formal meetings
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5. The process can take more than a year
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7. The IP UK arm reports its findings in February 2017  here    report  9/12
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9. It is logical that present funding bodies will not fund anything else until at soonest, April
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11. Which means your pilot project will depend on other resources
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13. They may include  companies/organisations with less experience of funding this type of project
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15. The ultimate rationale is to demonstrate that your pilot project is worthwhile to the participants couched in their terms
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17. The IP operates its DMCs three days per week from 1000 to 1600
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19. You could aim, initially, for a pilot project of one day per week from 1100 to 1500 
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21. The normal IP way of operating involves many formal meetings.  
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23. The process can take more than a year.  Included in that is finding the finance.  
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25. Because the IP project is  venture-based, potential stakeholders are told what is hoped to happen. 
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27. You start under your own steam and as you gain momentum, interest will grow
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29. You will inform potential stakeholders what has happened, what is happening, and what will happen.  These all add up to innovation within an innovation   
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31. 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.  
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33. more

1. List your reasons
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3. Collect evidence - GPs*, CPNs, other healthcare professionals, but you may need to convince them
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5.                          past local press, carer support groups, simple questionnaires, door-stepping(?)
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7.                          post an exploratory article in the local press - take note of 1.5.6 
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9. Assuming the reader is a carer, your first port of call is your GP.  Do not assume that all GPs are dementia-fluent - more.   
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11. Before seeing any GP, even any healthcare professional, you will have looked at dementia prevalence  

1. Space for two dozen people  - 10 carees max, 10 carers max, 4 volunteers  
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3. A separate room for a dozen people -  one half in the big room, the other in the back room
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5. Toilets including disability toilet(s)
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7. Equipment storage
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9. Close to at least a mini-supermarket and, by initial consensus, a fish and chip shop  reason - 2 here
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11. 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.
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13. Local community transport may well be part of the consideration
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15. Look to your host re being constituted

1. The team needs to formalise how the finance will operate
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3. 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.  
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5. Look initially to your host re 1.4.3 and handling daily cash from carers.  Perhaps the Treasurer, as appropriate, could help.

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.  
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3. Publicity is not something you rush into.  
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5. 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
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7. New networking may well be required.  Delicate networking.  That's why you are doing it.  Start after good discussion with the team.
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9.  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!)
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11. 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
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13. 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." ?
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15. 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. 
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17. Another test is the GPCOG Screening Test here page 5 
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19. You don't set out to be an expert.  Don't go empty-headed.
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21. Time to look at      3 and 8   What are the criteria for participation within your DIY DMC?  here
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23. 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.

1.5.2     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.
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3. 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
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5. According to the direction you want to travel, other roles will emerge - more later

1.5.5  Premises

1. See 1.3
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3. 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   
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3. When ready, there is plenty of text to come
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5.  Heading 2 gives initial text for consideration later

1.5.7  Activities - 

1. Which include some bought items and mainly DIY items
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3.  There is a page on the topic
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5. Decide how these activities will materialise

1. Evaluate the foregoing together
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3.                     Heading 2 below
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5. Decide what advice is needed
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7. Formulate

1. A DMC is an up-to-date version of a daycare centre 
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3. DMCs have been running in Holland with great success for twenty years
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5. Being faced with dementia has substantial consequences 
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7. Stigma - people are frightened of dementia 
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9. Stigma - lack of understanding that dementia is caused by a medical disorder
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11. Stigma -  fear of  'accelerated' nursing home admission increase public fear of dementia
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13. services are often fragmented
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15. DMCs reduce behavioral problems
17. 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. 
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3. 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.
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5. 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 
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7. 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
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9. 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
11. 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 
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13. 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 
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15. 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
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17. One last item - -  read this highly informative story.