Luton’s Annual Dementia Conference 18 th July 2014

1. Luton’s Annual Dementia Conference 18th July 2014 Welcome to

2. Photo Disclaimer Toilets & Fire Alarm Mobile Phones Presentation Slides House- Keeping

3. Cllr. Mahmood Hussain Portfolio Holder – Adult Social Care Luton Borough Council Welcome & Opening Address

4. Pam Garraway Director Housing & Community Living Luton Borough Council The Luton Perspective

5. Keynote Speaker Barbara Pointon M.B.E. Think Relationships!

6. THINK RELATIONSHIPS!Towards excellent care and support for carers’ and those we care for. Barbara Pointon MBE Former carer Ambassador for Alzheimer’s Society and Dementia UK Member of the Standing Commission on Carers barbara@pointon.name

7. Malcolm, aged 51 just after diagnosis (apologies to Harry Worth)

8. Pre-diagnosis: tell-tale signs and ‘forgetfulness’ • Family thinks “Something’s wrong”. Uncharacteristic changes: • Unusual behaviour, getting lost in familiar places, managing cash or basic maths, leaving a pan on the hob to boil dry, • General confusion, making mistakes in an ingrained skill • Not the usual kind of forgetfulness, brain ceases to lay down new memories, no memory there to ‘jog’. • Conversations – keep to the right now and the distant past • Repetitive questions – reply as though for 1st time • Save yourself annoyance and protect your relationship

9. Carer’s role in process of diagnosis • “I’m fine – nothing wrong with me” (No memory laid down of recent difficulties) • Mini-Mental State only tests cognition • Just as important: functions in everyday living – the carer is the only one who can give a true picture. • ‘Patient confidentiality’. • Carer wanting to give important information, not seeking it. • Seeing patient and carer together – can produce a big row! • Triangle of trust between the person with dementia, the person who knows them best and the professional. • Treating the family carer as a partner in care

10. Supporting the carer in the early years • Because of gradual loss of cognition, caring for people with dementia is significantly different from caring for the frail elderly. Requires special skills and information. • Providing ongoing, good personalised information, practical advice, guidance and emotional support for the carer. • Unwittingly giving the wrong kind of care • What not to do: contradict, correct, treat like a child, take over or be bossy.. • May have ‘child-like’ problems, but has adult feelings

11. Giving the right kind of care and support • The majority of people with Alzheimer’s have visuo-spatial perceptual problems. Can be at the root of strange behaviour • The eye sees fine, but the brain misinterprets what is seen – e.g. that people or animals on TV are in the room • It’s not what we do, but the way that we do it. Do with, not for people • Give choice – e.g. garments – preserve autonomy • Communication – silence - wait for a reply. • Celebrate and encourage what can still be done, rather than bemoan what can’t.

12. Celebrate what can still be done

13. Enjoy good times together

14. Giving the right kind of care and support • Past likes and dislikes may not persist – new ones may appear • Hiding and hoarding – not done to deliberately annoy! • When you understand, you can stop scolding and make allowances. • First ‘accident’ – can’t find the loo – keep the door open. • Clinging to social and hygiene norms may not be appropriate • Advice: “Who is it a problem for? Go with the Flow, however bizarre it seems”. Caring suddenly got a lot easier • Without good advice, carers get stressed, the relationship suffers and they may find they can’t go on caring

15. Who can help? • Every carer now has to be seen by a professional to discover their needs, which should create a gateway to support. • Top of the list: access to someone with dementia care expertise to supply personalised information, practical advice about the right kind of care, and emotional support. One named person. • Support, gently drip-dripped and ongoing, possibly commissioned from the voluntary sector, will protect family relationships, give confidence to the carer thus delaying or preventing expensive crises further down the line. • Challenge the current situation where carers can only get help when their needs become substantial or critical.

16. A word in a Commissioner’s ear • Crisis management is not the best use of scant budgets. • ‘When carers are well supported, they can provide better care for the person they care for and report better well-being outcomes themselves’.( Ablitt, Jones and Muers 2009) • Two good outcomes for the price of one! • Support is still very patchy nationwide • Family carers save the State £119 billion a year. Surely they should have something in return? • More opportunities to meet other carers and gain peer support.

17. Using services • Domicilliary care – all adequately dementia-trained. • Takes time to build a trusting relationship – end miniscule time slots - people with dementia shouldn’t be rushed • Continuity, reliability and the right attitude make for good care and support • Poor quality paid services simply add yet more to the carer’s heavy load. • Informal help from the community. The dogwalkers: good for Malcolm and a precious break from 24/7 vigilance for me. • New friendships were forged and still stand today.

18. Perplexing behaviours • There’s nearly always a reason • The story of the mirror • Travelling backwards in time; visuo-spatial problems; aggression. • Antipsychotics – should only be used in the last resort and in the short term. • And Still the Music Plays. Graham Stokes (Hawker 2009) • Eight Caregiving Maxims for Dealing with perplexing behaviours (BP) handout.

19. From home to carehome • Agency live-in carers; lack of training and continuity – 14 different people in 8 months. • Malcolm’s aggression and my exhaustion led to placing Malcolm in a home. • Most people these days are self-funding. They pay good money for care and have a right to expect high, not just minimal standards. • Carehome staff did not involve me as a partner in care – impact on Malcolm. Absence of the triangle of trust • Carers now have a right to be involved in making decisions.

20. December 1999

21. April 2000

22. The dining room, turned into Malcolm’s room, with electrically-operated recliner chair, hospital bed, hoist and manual wheelchair

23. Towards excellent care in the advanced stage • All medication doses, including those for other conditions should be reduced in line with the severity of the dementia. • Catheterisation is not recommended in dementia. Essential to use continence pads of the right size, absorbency and snug fit. • Swallowing problems: cold drinks are more easily controlled than tepid ones. Speech and Language therapists advise on which of 16 levels of soft food to use. (Check in carehomes) • Regular breaks are important : another careworker replaced me one day a week- the same person each time. Regular health checks in the pipeline. • Access to expert dementia nursing advice is essential

24. Out-of- Hours Doctors/ Paramedics Consultant Continence Adviser The Web of Care (Last 7 yrs) District Nurses Speech & Language Adviser GP Care team 2 live-in carers (alternating weekly) Replacement carer [Some night nursing – Health] Emergency carers & Barbara Dietician Dementia Advisory Nurse? Community Dentist Malcolm & Barbara Occupational Therapist Social Worker Equipment Service Oxygen service Direct Payments Team; Rowan Org. Wheelchair Service Alzheimer’s Soc outreach worker Physiotherapist Alternating Mattress technician

25. COGNITION, ABSTRACT THINKING, KNOWLEDGE, FINER SKILLS CONTROL OF BASIC PHYSICAL FUNCTIONS PSYCHE, 5 SENSES AND EMOTIONS ESSENCE/ SPIRIT

26. Sensory/emotional/psychological/spiritual needs • The person is not “a vegetable” and should not be made to feel isolated. TIME needed to stimulate 5 senses: • Sight: smiley faces; changes of viewpoint; red/yellow spectrum • Taste: oral feeding; sweeter, stronger flavours; • Smell: of cooking, aromatherapy; favourite perfume. • Hearing: favourite music, humming, basic human need to be talked to. • Touch – the most important. Stroking hands & face; hugs; calming night fears. • Love is at the centre of all major faiths, but religious or not, we all would want to feel safe and cherished

27. Barbara and Malcolm, January 2006

28. What do you as family carers want? • Given the unique nature of dementia you need to be recognised and given special help to deal with it? • Involved in decisions; treated as a partner in care in a triangle of mutual trust in all situations? • Easy access to expert personalised advice throughout the journey in order to offer the right kind of care? • Regular breaks and assessments to maintain your own health and well being? • High quality services for both yourself and the person you care for?

29. Dementia Action Alliance The Carers’ Call to Action Supporting the needs and rights for family carers of people who have dementia

31. Sophie Andrews Chief Executive C:\Users\radfordk\Desktop\big lottery The Silver Line Sue Johnson Talks about Bob.mov

32. Back by 11.40am please.

33. Keith Conway A Personal Journey

34. Anna Flynn Luton’s Programme

35. Christina Christian CrISP Carer Information & Support Programme

36. Helen Crawford Cognitive Stimulation Sessions

37. Cognitive Stimulation

38. What is it? • An intervention for people with dementia • Suitable for early to moderate stages • Provides a range of activities that stimulate cognitive and social functioning

39. Based on programme developed and evaluated by UCL Combines features of existing interventions such as reminiscence, reality orientation and other psychosocial approaches

40. NICE GUIDELINES • "People with mild / moderate dementia of all types should be given the opportunity to participate in a structured group cognitive stimulation programme. This should be commissioned and provided by a range of health and social care workers with training and supervision. This should be delivered irrespective of any anti-dementia drug received by the person with dementia".

41. Why CS? • Research showed improvements in cognitive function as measured by tools such as the Mini Mental State Examination (MMSE) • Participants reported significant improvement in quality of life • No side-effects have been reported

42. Sessions • Group of up to 8 people • 1-1.5 hours • Trained facilitator with 1 or 2 additional helpers • Assessment at referral to ensure it is appropriate

43. What happens? • Each session has a different theme • Consistent structure including a chosen song, reality orientation board and discussion on newspaper article. • All activities shared as a whole group

44. Guiding Principles • New ideas and associations • Stimulate language • Opinion rather than fact • Choice • Involvement • Inclusion • Building relationships • Continuity and Consistency • Providing triggers to recall • Respect • Fun

45. Denise Noice Singing Café

47. Stopsley Tent Project was the vision of a carer of someone living with dementia and was launched in 2011 • It is run by and for the community by volunteers Tent Project?

48. Two activities delivered under the umbrella of the Project by a team of volunteers once a week: • A Singing Cafe for people with dementia and their carers • A Social Group for the more able to meet for a chat over a cup of tea What is the Tent Project?

49. The aim of the Project is to provide a safe haven for vulnerable people and their carers and to provide the opportunity of meeting new people, making friends and supporting each other. Aims & Objectives

50. Create moments of success by focussing on their remaining skills • Focus on their achievements • Ensure carers have a forum to share their experiences Aims and Objectives