Communication Challenges and End of Life Care in People with Dementia

Friday May 8th, 2009

Dr. Max WatsonLecturer Palliative Medicine University of UlsterLecturer Palliative Medicine University of Ulster

Honorary Consultant in Palliative MedicineHonorary Consultant in Palliative MedicineNorthern Ireland Hospice, BelfastNorthern Ireland Hospice, Belfast& Princess Alice Hospice, Esher& Princess Alice Hospice, Esher

Clinical adviser Hospice friendly Hospitals programme, DublinClinical adviser Hospice friendly Hospitals programme, Dublin

Agenda

Assumption 1

‘Every person with a progressive illness has a

right to palliative care’

(WHO, 2004)

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)

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

•Loss of cognition/communication makes all care giving complex

•Each person’s dementia is unique.

Assumption 3

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

Assumption 5Communication is a two sided process

Patient

• Frustration• Fear• Anger• Indifference• Worry• Grief

Relative

• Grief• Isolation• Fear• Anxiety• Loss• Anticipation

“We co-create each other”

Assumption 6 You don’t have to speak to communicate

,

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•

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)

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

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

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

Background to Communication Issues in Dementia

The filter circumscribing awareness.

ENVIRONMENT

BODY UNCONSCIOUS

Dementia Filter

The well person: awakeMEMORIES

RESPIRATION

HUNGER

TASTE

SMELL

SOUND

SIGHT

TOUCH

Dementia Filterintact

NOISE(TELEPHONE)

RECENTMEMORIES

The normal person: asleep.

FULL BLADDER

CHILDHOOD MEMORIES

DREAMS

TELEPHONE

CHILDHOODMEMORIES

RECENTMEMORIES

Confusion.

PAIN

FULL BLADDER

Sights

Dementia FilterCompromised

Communication needs of patients with dementia

Communication needs of patients with dementia

The same needs as you..• Meaning• Affirmation• Laughter• Connection• Personhood• Love• Relationship

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)

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

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

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?

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

Language in Stages of Dementia

Stage /Aspect ofLanguage

Form/ Syntax Phonology

ContentSemantics

Use Pragmatics

Early Intact Affected Affected

Middle Intact Markedly Affected Markedly Affected

Late Often Intact Bizarre,meaningless

Often unable

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.

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

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?”

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

End of life Care

End of life Care

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

The Ways In Which People With Dementia Die

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.

•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

Hospitalised patients with dementia

More likely to: • Stay in hospital• Have bed moves around the hospital• Develop infections• Receive active interventions

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

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

Assess what patients are feeling

• Identify distress• Monitor behaviour cues• Pattern recognition• Dis DAT• Screening checklist• Specific checklist• Know the story….• Read the passport….

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

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

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

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)

How do we diagnose dying?

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 be relatively sudden!

Restlessness in dying phase

Exclude• Pain• Full bladder/rectum• Fear/anxiety - any

cause

Management• Benzodiazepines eg

diazepam/midazolam• Haloperidol• Phenothiazine - low

dose

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.

“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

Agenda

Communication is key…

Words - To a partner with dementia by Ferma McLean

I reach out with words but find you are no longer there to touch; you have retreated to that remote and personal place, from which I am excluded.

I summon up recollections of shared delights, toss them in desperation at your indifference, bright and futile as fireflies holding a lamp to the night.

It would be wise now to desist, not to batter your private fortress with my words, yet they continue

and you leave the room so abruptly, so angrily, that my imploratory words become reproachful echoes,sounding across the chasm of my loss.

Ferma McLean (2003) If I’d Known, Narellan: New South Wales.