Dementia innovation maggie stobbart-rowlands presentation - open forum events

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Maggie Stobbart-Rowlands presentation at Open Forum Events' Dementia: Innovation conference.

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Dementia innovation maggie stobbart-rowlands presentation - open forum events

  1. 1. Compassionate care for people with dementia End of Life care for people with dementia Maggie Stobbart-Rowlands National GSF Centre www.goldstandardsframework.org.uk info@gsfcentre.co.uk
  2. 2. The National GSF Centre in End of Life Care The leading EOLC training centre enabling generalist frontline staff to deliver a ‘gold standard’ of care for all people nearing the end of life “Every organisation involved in providing end of life care will be expected to adopt a coordination process , such as the GSF” DH End of Life Care Strategy July 08 The right care, for the right people, in the right place, at the right time… everytime
  3. 3. Current GSF Training Programmes GSF Primary Care- 95% Foundation Level GSF Care Homes - 2300 care homes trained GSF Acute Hospitals – 40 acute hospitals GSF Domiciliary care – 300 care workers GSF Community Hospitals - 42 community hospitals GSF Dementia Care- 60 candidates
  4. 4. Improving End of Life Care with GSF Head Hands and Heart HEAD Evidenced-based knowledge, clinical competence ‘what you know’ HANDS Systems minded care coordination ‘what you do’ HEART person-centred compassionate care ‘the way you do it’
  5. 5. Decreased hospital admissions and deaths with GSFCH Training programme as measured by ADA phases 4-6 Halving hospital deaths Potential Cost Savings – estimated £30-40k/ care home/ year - £1-2 m / PCT area
  6. 6. The National Dementia Strategy • Focus on – Diagnosis rates – Dementia Friendly Communities – Dementia Friendly Hospitals – Research • Missed opportunity of also focusing on good end of life care for people with dementia.
  7. 7. Your understanding of Dementia • In general is it widely understood that dementia is a terminal illness? • Is it widely accepted that a person with dementia is an appropriate referral for palliative care? • How comfortable are you in caring for someone with dementia in the final stages?
  8. 8. Prevalence 1 • Dementia affects ~ 5% people > 65 years – Rises to 20% aged over 80 years – 36% live in a Care Home • ~820,000 people in the UK have dementia – Likely to double in the next 20 years – Current cost £17 billion • More than cancer, stroke or heart disease • ‘A global health and social care crisis’
  9. 9. Prevalence 2 • Only 1/3rd people with dementia have any specialist healthcare assessment or diagnosis – Lack of identification by GP – Stigma • When they do it is often: – Late in the progression of the illness – In crisis – Too late to enable effective interventions • National GP Contract ‘Quality and Outcome Framework’ (QOF) – New incentives for increased identification of dementia and entry on registers
  10. 10. End of Life Care in Dementia – what do we know? Quality of dying? NHS Complaints Certification of death The trajectory of dementia Terminal illness?
  11. 11. Why does dementia matter in end of life care? • Increasing ageing population = higher risk of dementia • Age is also a big risk factor for most cancers. • By 2030 - 63,000,0000 people worldwide will have dementia(2) • By 2030 – 70% of all cancers will occur in elderly people(1)
  12. 12. Why does dementia matter in end of life care? • ¼ of Acute hospital beds are occupied by people with dementia • 1/3rd of people in acute hospital beds are in the last year of life • On average ¾ of care home residents have some degree of cognitive impairment
  13. 13. 70% of UK adults said they would be scared of moving into a care home in the future. Reasons given:- • 53% said the risk of their relative being abused • 18% said risk of their relative losing their independence • 12% said lack of activities for their relative/boredom • 6% said that they would have less influence over decisions about their care • 2% said risk that the home would be closed • 1% said another concern not listed • 8% didn’t know.
  14. 14. Moving between homes • 45% said this was because their care needs became too high for the home to cope • 22% said it was because the quality of care was poor • 7% said it was because the home closed • only 1% said the reason was the fees being too high • a further 39% responded ‘other’ • 1% did not answer this question. • nearly a third (32%) of respondents said the person with dementia had to move care home
  15. 15. Danger of under diagnosis of cancer in people with dementia. • People with Alzheimers Disease have a 69%lower chance of being treated for cancer. (4) • A Dutch study with Elderly Care Physicians found that advanced dementia was the leading cause of non-referral of patients with suspected cancer. (5) • GPs are more likely to discuss end of life care arrangements for patients with cancer than with other conditions such as dementia. (6)
  16. 16. Prognosis • What is the cause of death in patients with dementia? – Death due to unrelated cause – Death directly from Dementia – Death as a result of interaction between dementia and other disease
  17. 17. Age Bands 65 to 74 75 to 84 85+ Cancer Number of deaths 33305 43330 20474 Number with dementia 977 3800 5951 % with dementia 2.90% 8.80% 29.10% Circulatory Number of deaths 31548 71469 67962 Number with dementia 941 6319 19992 % with dementia 3.00% 8.80% 29.40% Respiratory Number of deaths 9615 21019 18239 Number with dementia 1817 5224 % with dementia 2.90% 8.60% 28.60%
  18. 18. Advanced Dementia • Clinical indicators that patients with dementia are approaching the end stages of their disease process: – Unable to walk without assistance – Urinary and faecal incontinence – No consistently meaningful verbal communication – Unable to dress without assistance – Barthel score <3 – Reduced ability to perform activities of living Gold Standards Framework (2008)
  19. 19. Advanced Dementia • Plus any one of the following: – 10% weight loss in previous 6 months without other cause – pyelonephritis or urinary tract infection, recurrent fevers – serum albumin 25 g/l – severe pressure ulcers – reduced oral intake/weight loss, – aspiration pneumonia
  20. 20. Advanced Dementia • Common complications include1: – Pneumonia (41%) – Febrile episodes (53%) – Eating problems (86%) • All are predictors for high 6 month mortality (~50%) 1. Mitchell S et al. NEJM 2009; 361 (16) 1529 – 1538.
  21. 21. Advance Planning
  22. 22. Thanks for looking after me in your magnificent dementia care home . PLEASE………. Let me be outside in the fresh air as much as possible Don’t check my blood, or take my blood pressure Do give me beer, cake, crisps, butter Put me in front of the DVD box set of England winning the Ashes 2005 on repeat and in HD Don’t put on any garage music, rap or Craig David Don’t give me aspirin, anti-hypertensives, statins anti- psychotics, Do give me pain killers, opiates, antibiotics. Don’t try and resuscitate me. Thanks
  23. 23. Recall an episode of care that you were involved in or witnessed with a person with dementia Consider: Attitude Behaviour Compassion Dialogue
  24. 24. 1. Did your or their actions value & honour that person? 2. Did you/they recognise & acknowledge the individual uniqueness of that person and others involved? 3. Did you/they make a serious attempt to see your/their actions from the perspective of that person?
  25. 25. If you had dementia What would you want for yourself?
  26. 26. GSF Dementia training programme Key Aims 1) Improve person centred care & reduce carer stress 2) Improved assessment of symptoms including pain & distress 3) Improvement in Advance care planning & best interests (MCA) 4) Increase in people dying in their usual place of residence by reducing inappropriate hospital admissions and deaths
  27. 27. Sessions Key topic Comparative Evaluation Outcome 1. Identify Right person Awareness - of impact, dignity, carers Confidence survey Case studies Greater knowledge skills and confidence 2. Assess – clinical Right care Pain management - and symptom control Questionnaire Greater knowledge +skills in pain assessment 3. Assess – personal Right care Advance Care Planning- needs and preferences recorded Case studies Increased numbers offered ACP 4. Plan- care Right place, right time Reduce hospitalisation - the right to die in the preferred place of residence Supportive Care Analysis Case studies Decreased hospitalisation ↓crisis ↓hospital deaths The GSF Dementia Training programme (4 x 1 1/2 hr sessions – distance learning)
  28. 28. “ the course has changed the whole ethos & atmosphere of the home” “The GSF dementia training has been very educational and interesting for me. I hope that in the future others will have the same opportunity “ ‘Brillian t course’ ‘Very educationa l and interesting’ What the course did for us GSF End of Life care for people with dementia We have gained knowledge and confidence in the correct use of pain charts which we use as evidence of need to educate the GPs as to the need for good pain relief.
  29. 29. • For further information www.goldstandardsframework.org.uk info@gsfcentre.co.uk
  30. 30. References 1. Yanuki, R. Ries, LA. Cancer in older persons: an international issue in an aging world. Semin – Oncology. 31(2), 128-136. (2007) 2. Ferri, CP. Prince, M. Brayne, C et al. Global prevalence of dementia: a Delphi consensus study. The Lancet 366 (9503). 2112 – 2117. (2005) 3. Solomons, L. Solomons, J. Gosney, M. Dementia and Cancer. Aging Health. 9 (3): 307 – 319.(2013). 4. Roe, CM. Behrens, MI, Xiong, C et al. Alzheimers Disease and Cancer. Neurology. 74 (2) 106 – 112. (2010) 5. Hamaker, ME. Hamelink, VC et al. Non referral of nursing home patients with suspected breast cancer. Journal of Advanced Medicine: Dir Assoc. 13 (5), 464 – 469. (2012) 6. Abarshi, E. Echfeld, M. Donker, G et al. Discussing end of life issues in the last months of life: a nationwide study among GPs. Journal of Palliative Medicine. 14 (3), 323 – 330. (2011) 7. McCormick, WC. Kukull, WA, van Belle, G et al. Symptom patterns and comorbidity in the early stages of Alzheimers Disease. Journal of American Geriatric Society: 42 (5) 517 – 521. (1994) 8. Iritani, S. Toghi, M. Miyata, H. Ohi, G. Impact of dementia or cancer discovery and pain. Psychogeriatric. 11 (1), 6 -13. (2011).
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