1 / 52

Communication Challenges and End of Life Care in People with Dementia

Communication Challenges and End of Life Care in People with Dementia. Friday May 8 th , 2009 Dr. Max Watson Lecturer Palliative Medicine University of Ulster Honorary Consultant in Palliative Medicine Northern Ireland Hospice, Belfast & Princess Alice Hospice, Esher

burton-coffey
Télécharger la présentation

Communication Challenges and End of Life Care in People with Dementia

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. Communication Challenges and End of Life Care in People with Dementia Friday May 8th, 2009 Dr. Max Watson Lecturer Palliative Medicine University of Ulster Honorary Consultant in Palliative Medicine Northern Ireland Hospice, Belfast & Princess Alice Hospice, Esher Clinical adviser Hospice friendly Hospitals programme, Dublin

  2. Agenda

  3. Assumption 1 ‘Every person with a progressive illness has a right to palliative care’ (WHO, 2004)

  4. Assumption 2 “Person Centred Care and Palliative Care approach are similar” ‘Dementia care should incorporate a palliative care approach from the time of diagnosis until death. The aim should be to support the quality of life of people with dementia and to enable them to die with dignity and in the place of their choosing, while also supporting carers during their bereavement’ (NICE, 2006)

  5. Assumption 2 “Person Centred Care and Palliative Care approach are similar” Person-centered care refers to a care philosophy in which a positive relationship is established that respects the person’s life history and preferences, honors identity, engages in meaningful activity, and encourages an overall sense of well-being. (Fazio, 2008) Kitwood 1997

  6. Assumption 3 • Loss of cognition/communication makes all care giving complex • Each person’s dementia is unique.

  7. Assumption 4 • The communication needs and challenges faced by patients, carers and professional staff change widely over the course of the disease • Malcolm aged 51 Malcolm aged 66

  8. Assumption 5Communication is a two sided process Patient Relative Grief Isolation Fear Anxiety Loss Anticipation • Frustration • Fear • Anger • Indifference • Worry • Grief “We co-create each other”

  9. Assumption 6 You don’t have to speak to communicate ,

  10. Assumption 6 You don’t have to speak to communicate Verbal Non-verbal – Facial expression – Eye contact – Body language – Gesture – Paralinguistics • e.g. - Intonation, Vocal quality, Timbre, Loudness, Pitch, Rhythm , – Words •

  11. Assumption 7 End of Life Care • Most people with dementia die in nursing homes (Mitchell et al 2005) • Quality of care and quality of life when nearing death for patients with dementia are often poor (Kayser Jones 2002) • Too little or too much is often done to patients with dementia in environments that inhibit optimal care • Too little privacy/ repositioning/ staffing • Too much antibiotic use and nasogastric feeding tubes despite evidence that feeding tubes neither prolong life nor reduce aspiration in this group (Gillick, 2004)

  12. Assumption 8 How you understand dementia determines approach to communication Neuropsychiatric model • Commonest Model in West • Key professionals old age psychiatrists, • Assumes patient has little awareness or control • Patients are victims, “sufferers” • Assessment and treatment focus on cognitive and behavioural deficits through reliance on drug treatments though largely ineffective • Carers largely ignored despite research evidence that interventions reduce carer stress and social breakdown (Zarit 1989) • Psychiatric “block” for Palliative care

  13. Assumption 8 How you understand dementia determines approach to communication • Neurological Condition • Treated by neurologists and therapists, OT, PT, SLT • Patient coping with impairments • Working to achieve wellbeing • Family involved in therapeutic alliance to overcome impairments • Easier transition to end of life care

  14. Assumption 8 How you understand dementia determines approach to communication Normal Ageing Historical and non western model • Manifestation of wear and tear • “Mind failure” like heart or lung failure • Despite changes in behaviour still integral part of family • Valued older person • Personhood retained • BUT..Risk of some needs not being recognised

  15. Background to Communication Issues in Dementia

  16. Dementia Filter ENVIRONMENT BODY UNCONSCIOUS The filter circumscribing awareness.

  17. SOUND SMELL TASTE SIGHT TOUCH Dementia Filter intact HUNGER MEMORIES The well person: awake RESPIRATION

  18. NOISE (TELEPHONE) The normal person: asleep. DREAMS RECENT MEMORIES FULL BLADDER CHILDHOOD MEMORIES

  19. TELEPHONE Sights Confusion. Dementia Filter Compromised PAIN CHILDHOOD MEMORIES FULL BLADDER RECENT MEMORIES

  20. Communication needs of patients with dementia

  21. Communication needs of patients with dementia The same needs as you.. • Meaning • Affirmation • Laughter • Connection • Personhood • Love • Relationship

  22. Communication Needs Of Early Stage Individuals • Understanding and acceptance of the diagnosis • Safety vs. Personal Autonomy • Planning Ahead (Barclay, Barclay and Abeles, 2004) Advance Care Planning Create a Passport…. From Family and Friends: • Intimacy • Community • Meaningful Activity (Kuhn, 2008)

  23. Communication Issues in Early Stage Dementia • subtle losses in vocabulary, reading & writing • difficulties word finding • comprehending abstract language (e.g., slang) difficulties on the telephone • difficulties verbalizing ideas • feelings of being outpaced or keeping up with conversation • repetition of stories

  24. Strategies in Early Stages • Learn the limits of persons memory and attention Span • Use simple and direct language • Repeat messages frequently • Allow patient to reminisce and express feelings • Allow time for processing • Encourage “talking it out” • KEY SKILL IS LISTENING

  25. Late Stages (Severe to Profound Impairment) • Severely diminished naming • Exhibits more paraphasias (word and sound substitution), echolalia (repetition of other’s speech), palilalia (rep. of own speech) • Poor comprehension • Use of jargon and rambling speech, incoherence • Decreased eye contact • Diminished output or may be meaningless or bizarre; may become mute • Is mummy in pain?

  26. Communication Skills“People with dementia are a part of us not apart from us” • Approach from the front • Be calm and supportive • Focus on the feelings, not the facts • Pay attention to tone of voice • Address the person by the name he or she prefers • Speak slowly, use short, simple words • Ask one question at a time • Be patient, flexible and understanding • Learn who the person is

  27. Language in Stages of Dementia

  28. Improving Comprehension - • Form Simplify syntax; speak slower than normal, with pauses between ideas and for replies • Multiple forms of communication (e.g. – auditory, visual, tactile) – provide object or picture • Limit the number of conversational partner. • Use accepting, friendly tone. Content • Talk about the here and now • Simplify vocabulary • Use proper nouns • Restate what was not understood –change words if necessary.

  29. Caregiver Stress and Burden Relatedto Communication Problems Communication problems: - perceived as primary problem by caregivers in coping with dementia - increase risk of early institutionalization • may be reduced if education of caregivers is adequate (re: nature of communication) and if respite support is available

  30. Challenges of trends in dementia care OLD: Therapeutic Activities Model of Care • What services do we have to provide? NEW: Individualized Care • “Who is this Person?”

  31. More pressure on carers and staff/ or useful positive language shift?? Behavior in “old” language – Agitation – Rummaging or “Shopping” – Wandering – Egress or Elopement – Refusing Personal Care – Repetitive Crying Out New language for behavior – Energetic/Assertive – Seeking – Exploring – Assertive/Focused/Showing Initiative – Cautious – Assertive

  32. End of life Care End of life Care

  33. Dying With Dementia orDying From Dementia Today • Not recognised as a terminal illness • Significantly more likely to have: arterial blood gases and other blood tests ;NG tubes; catheters • 1/3 less likely to be referred to Palliative Care • Prescribed fewer ‘palliative’ drugs (50%) Bayer 2006 • Less drugs for pain, breathlessness, pyrexia Addington Hall 1997

  34. The Ways In Which People With Dementia Die • From the complications arising from end-stage dementia • From another illness whilst in the early stages of dementia, e.g. cancer, cardiovascular disease • From a mix of mental and physical problems, where dementia may not be the main cause of death but it’s symptoms exacerbate co morbid conditions Cox, S., & Cook, A. (2002). Caring for People with Dementia at the End of Life. In J. Hockey & D. Clark. (Eds.), Ending Life in Institutional Care. Milton Keynes: Open University Press.

  35. Hospitalised patients with dementia More likely to: • Stay in hospital • Have bed moves around the hospital • Develop infections • Receive active interventions

  36. Communication challenges in providing palliative care for patients with dementia • Symptom management • Prognostication • Decision making • Advance care plan • Caregiver stress • Cross institution information transfer – Passport of care

  37. Dementia prognostic factors Prognostic Indicator Guide (GSF) ▪ Unable to walk without assistance, ▪ Urinary and fecal incontinence, ▪ No consistently meaningful verbal communication, ▪ Unable to dress without assistance ▪ Barthel score < 3 ▪ Reduced ability to perform activities of daily living Plus any one of the following: 10% weight loss in previous six months without other causes, Pyelonephritis or UTI, Serum albumin 25 g/l, Severe pressure scores e.g. stage III / IV, Recurrent fevers, Reduced oral intake / weight loss, Aspiration pneumonia

  38. Assess what patients are feeling • Identify distress • Monitor behaviour cues • Pattern recognition • Dis DAT • Screening checklist • Specific checklist • Know the story…. • Read the passport….

  39. Dementia doesn’t prevent pain due to… • Osteoarthritis • Cardiac/angina • Gastro-intestinal • Related to other underlying conditions e.g. cancer • Related to falls • Pressure sores • Full rectum/bladder • Head/ear/toothache

  40. Discomfort Scale for Dementia (DS-DAT) • 9 categories of behaviour noisy breathing negative vocalisation facial expression body language • 4-point Likert scale of a 5minute observation • frequency,duration and intensity Hurley 1992

  41. Assessment of SufferingMini Suffering State Examination (MSSE) • not calm • screams • pain • decubitus ulcer • malnutrition • eating disorder • invasive action • unstable • suffering (medical opinion) • suffering (family opinion) 63% died with high level of suffering Aminoff 2003

  42. Scales • Reliability Problems with specific scales. • Autonomic mismatch thus pulse and BP not always reliable • Facial expression, increased decreased • Behavioural changes in response to pain BUT • If a scale or ideally a couple of scales are used then symptom control is likely to be better (Kassa)

  43. How do we diagnose dying?

  44. Diagnosing Dying • Becoming weaker - increasingly bedbound • Spending more time asleep • Eating less • Difficulty in practicalities of voiding • Difficulty taking medication • Peripheral cyanosis/altered breathing Can berelatively sudden!

  45. Restlessness in dying phase Exclude • Pain • Full bladder/rectum • Fear/anxiety - any cause Management • Benzodiazepines eg diazepam/midazolam • Haloperidol • Phenothiazine - low dose

  46. Pain • Mood - agitated, withdrawn • Vocalising - moaning, screaming • Facial - grimacing, frowning • Body language - tense, rocking, splinting • Behaviour – wandering • Pain has strong social interpretation • More studies with patients with dementia are needed.

  47. “Patients need accompanying on that final journey”“The last part of life may have an importance out of all proportion to its length” Cicely Saunders

  48. Agenda

More Related