People with dementia in the acute

hospital:

Experiences and outcomes

Dr Liz Sampson

Senior Clinical Lecturer, Marie Curie Palliative Care Research Unit

Division of Psychiatry, University College London

Consultant in Liaison Psychiatry, North Middlesex University Hospital

A response to report-itis !

A case from the Ombudsman

“A former architect who had Parkinson’s dementia was taken

to x in Surrey after suffering paranoia and

hallucinations. The 72 year-old was given an antipsychotic

drug that left him like “a zombie, a ragdoll” and robbed him of

his dignity according to his wife. Doctors did not notice he

had developed pneumonia and he died within weeks. His

wife said their failings had “fast-tracked my husband to his

death” and the Ombudsman found he had been over-sedated

and nursing records fell short of standards”

Prevalence of Dementia (DSM IV)

Men:

70-79 16.4% (9.4-23.3)

80-89 40.4% (30.6-50.2)

90+ 48.8% (33.6-64.1)

Women:

70-79 29.6% (21.3-37.9)

80-89 52.9% (45.4-60.5)

90+ 75.0% (65.1-84.9)

Sampson et al. 2009

How common is dementia in the acute

hospital ?

Mukadam and Sampson 2011, Sampson et al 2009

DSM IV Dementia

Prevalence (95% CI) Study Year

Margiotta (330) 2006 26.1 (19.1 to 33.1)

Laurila (219) 2004 40.2 (33.7 to 46.7)

Zekry (349) 2008 43.3 (38.1 to 48.5)

0 20 40 60

Prevalence (%)

Sampson (617) 2009 42.4 (38.5 to 46.3)

BePaiD Study

• Estimate the prevalence and types of BPSD

• Impact of BPSD on the person with dementia,

– antipsychotic drugs, length of hospital stay, risk of adverse events, dying

• Prevalence of pain

– how well this is detected and managed by hospital staff

• The relationship between BPSD and Pain

Sample and setting

• >70 admitted to the Medical Acute Admissions Unit

• Cohort study (250 people with dementia)

• Recruiting at 2 London Hospitals (4 months at each)

Study Measures

Baseline

• Confusion Assessment Measure (CAM)

• Mini-Mental State Examination (MMSE)

• DSM IV Criteria Dementia

• Functional Assessment Staging Scale (FAST)

• Charlson Co-Morbidity Index (CCI)

Repeated measures (baseline and every 4 ± days)

• Behave-AD

• Cohen Mansfield Agitation Inventory (CMAI)

• PAINAD

• Do you have pain?

• Faces Pain Scale

On discharge or death

• Casenote review (ACOVE, economics, medications, AEs etc)

INDICATOR SCORE = 0 SCORE = 1 SCORE = 2 TOTAL

SCORE

Breathing Normal

breathing

Occasional laboured

breathing; Short

period of

hyperventilation

Noisy laboured

breathing. Long period

of hyperventilation.

Cheyne-Stokes

respiration

Negative vocalisations None Occasional

moan/groan. Low

level, speech with a

negative or

disapproving quality

Repeated troubled

calling out. Loud

moaning or groaning.

Crying.

Facial expression Smiling or

inexpressive

Sad, frightened,

frown

Facial grimace

Body language Relaxed Tense, distressed,

pacing, fidgeting

Rigid, fists clenched.

Knees pulled up.

Striking out. Pulling or

pushing away

Consolability No need to

console

Distracted by voice

or touch

Unable to console,

distract or reassure

TOTAL: (Max 10)

PAINAD

Total

(1612)

Screened, does not meet study

criteria (1320)

Screened, met study criteria

(292)

Patient had capacity

(63)

Personal Consultee

(215)

Professional Consultee

(14)

Assent form not returned

(23)

Not suitable

(1)

Total Participating Professional

Consultee (13)

Assented, not eligible

(4)

Total Participating

Personal Consultee

(188)

Total Participating with capacity

(29)

Consented, not eligible

(34)

Total Participants in study (230)

MMSE >24/AMTS>7 634 Discharged before seen 145 Does not consent 58 Too ill to take part 60 Missed the 72 hour window 78 Not Care of the Elderly 95 Limited English 124 Does not fit DSM Criteria 103 Consistent CAM POS 8 Planned admission 5 Deceased 10

Cohort characteristics

• Mean age 87 years , 66% female

• 76% white British

• 11% delirium on admission

• 30% no previous diagnosis

49%

7%

13%

31% House

Sheltered

Residential Home

Nursing Home

33%

27%

25%

15%

2-5 (functional deficit, difficulties with some ADLs)

6a-c (help putting on clothes, toiletting or bathing)

6d-e (double incontinence)

7a-f (speaks 5-6 words, can no longer walk, sit up smile or hold up head)

Management of BPSD

• 12% started on neuroleptics

• “treatment gap”

– 22.6% mittens or cotsides

– 15% increased supervision

– 6% family assistance

– 1% music, massage

Outcomes associated with BPSD

• BPSD at baseline are not associated with increased length of stay

• BPSD during admission are not associated with increased costs of

care

• BPSD during admission are associated with:

– Lower scores on the ACOVE indicators

– Increased adverse events

– Increased mortality

Pain

Self reported

• 49% of people with dementia in our study were unable to complete the

FACES pain tool

• 21% said ‘Yes’ they had pain in last 24 hours

Observed pain

• Pain during rest-28%

• Pain during activity-65%

• Persistent pain during admission 36%

Management of pain

• Of those who experienced pain at any time during admission, at

movement or at rest only 65% were prescribed an analgesic

• Preliminary analysis suggests that pain medications were only given to

30% of those who were in pain

• Non-pharmacological techniques were NEVER used

The association between pain and BPSD

p=0.003/0.005

p=0.02

p=0.04 p=0.01

Generalised estimating equations GEE- adjusted for age gender, delirium, severity, Charlson score,

reason for admission

Dying with dementia in the acute hospital

• 30 (13%) died during their admission

• Mean age 87 years

• 37% admitted from nursing homes

• 23% had delirium at admission (vs. 9% who were discharged)

• 70% of deaths were “expected”

• 67% were placed on LCP

Symptoms at death

Pain

• 27% died with pressure sores (grades 1-4)

• 50% of patients were noted by clinicians to be in pain in the last 48

hours of life

• Mean PAINAD of 2.69 compared to 1.49 for those who were

discharged

BPSD

• 50% of patients were noted by clinicians to be experiencing agitation

at the last 48 hours of life

? LCP

Pain and discomfort

BPSD

Staff

disengagement

Loss of personhood

Loss of person centered care

Its not all bad…

“That my aunt was treated for her infection and was sent back to the care

home in a much better condition”

“I'm glad she was recognised as someone who wanders off and therefore

placed in a specialised unit, so that she was safe”

“Having a care package arranged when leaving hospital”

“Being able to visit out of hours, staff were ok. Diamorphine in the end”

Conclusions

• BPSD are common, they may lead to

– Poorer quality care

– Increased adverse events

• Management of BPSD is still very basic and requires specialist support

• Commonly used pain tools may not be suitable for this population

• Pain appears to drive some BPSD

• Dying is recognised but poorly managed

• Some carers described good experiences

Acknowledgments

• Alzheimer’s Society

– Barbara Di Vita

– Sylvia Wallach

– Lynn Whittaker

• Health Services for Older People

• Dr Sophie Edwards and Dr Dan Lee

• Project team

– Nicola White

– Kathryn Lord

– Sharon Scott

e.sampson@ucl.ac.uk

@PainandDementia