Half a ton!
1. Hear us – Listen to us – See what we see – Remember and learn from what you have seen – Understand how those with dementia and their carers feel – Do whatever is required to advance the care of those who need care
2. Speak out on behalf of those who cannot speak out on their own behalf
3. Show compassion for those in distress
4. Continuity of care
5. Rules for entitlement to care that are easily understood
6. Rules re. funding that are easily understood
7. Remember that these people are still a SOMEBODY
8. Stop turning a blind eye and allowing them to be treated as a NOBODY
9. Value us, the Carers, for saving the NHS thousands and thousands of pounds
10. Value us, the Carers, for actually knowing our loved ones
11. Value us, the Carers, as experts in Alzheimer’s/Dementia relevant to our loved ones.
12. Value us, the Carers, when we are trying to get the best for our loved ones
13. Act with speed, efficiency and empathy
14. Respect for all of us
15. Tolerance of all of us
16. Improved awareness of the problems we face
17. Respect for basic needs
18. Medical and professional care should be readily available
19. Support, financial and otherwise, should be readily available to maintain people in their own home for as long as possible
20. Respect for the need for choices
21. Respect for those who live without hope of ‘cure’
22. Respect for future generations that they might be given hope
23. Appropriate and accessible support packages to enable Carers to support their own needs alongside their caring responsibilities
24. Appropriate financial support where necessary
25. Complete removal of the need to ‘do battle’ constantly
26. Treat our loved ones as individuals, and with compassion and dignity
27. Make it compulsory to correct AD/Dementia training
28. Arrange for Social Services to answer the phone
29. Arrange for Social Services to remember that when they give us an Emergency telephone number which then we have to ring, that it is an Emergency and that they should not keep us waiting all day for someone to respond
30. To enable us, the Carers, to organize time out for Me/Us
31. Allow us, as Next of Kin, access to the Care Plan
32. Allow us, as Next of Kin, access to the medications prescribed to our loved ones
33. Grant us the respect of Professionals that we are not STUPID.
34. Dementia training for nurses and auxiliaries on A&E and general hospital wards
35. All reviews, meetings etc between professionals involved in forming future care plans to include at least one significant Carer
36. Universal education to remove the fear which will allow respect and dignity
37. Funds for research
38. It could be you! Even worse, it could be your soul mate – dementia is no respecter of intelligence, wealth, profession, personality or age
39. Do not talk to me as if he/she is not there – talk to him/her; listen to him/her; he/she is a person too
40. No postcode lottery: equal access to medication, funding and care, wherever we live
41. The provision of “time for Carers” to pursue a hobby in their own without feeling guilty
42. Immediate planning on a global level to allow for improved information in terms of prognosis, to enable people to cope better with diagnosis, and to enable care packages to contain really useful provision today, before crisis points are reached, rather than after
43. Forward planning on a global level to allow for improved information in terms of prevention, thus providing a window of optimism for future generations
44. Immediate increase in Research Funding (Alzheimer’s UK research: £11 per sufferer, compared with £289 for every cancer patient according to the Alzheimer’s Research Trust. Dementia is responsible for 11 per cent of disability in over-60s; cardiovascular disease 5%; cancer 2.4% - acc. to WHO)
45. Consideration given to the impact of unpaid carers on future economies: who will support in the future those who currently work reduced hours/no hours, with correspondingly reduced NI contributions, pensions?
46. Consideration given to the possibility that the Carers of today may be bringing up a generation of future Carers, through no fault of their own
47. Speculate to accumulate: without increased Research Funding, there will be no steps forward in either prevention or cure; but increased Research Funding will result in a massive reduction of human misery and suffering, and a correspondingly massive reduction in the burdens placed on future generations
48. Accreditation Agency staff should be accountable to residents and relatives, not just to government departments.
49. Acknowledgement of and support for people in multiple caring roles
50. Investment of as much funding, and research and as many facilities into the care of the elderly as we currently invest into care of the young
Katie