People with dementia in the acute hospital: Experiences and outcomes

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1 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

2 A response to report-itis!

3 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

4 Prevalence of Dementia (DSM IV) Men: % ( ) % ( ) % ( ) Women: % ( ) % ( ) % ( ) Sampson et al. 2009

5 How common is dementia in the acute hospital? Study Year DSM IV Dementia Prevalence (95% CI) Margiotta (330) (19.1 to 33.1) Laurila (219) (33.7 to 46.7) Zekry (349) (38.1 to 48.5) Sampson (617) (38.5 to 46.3) Prevalence (%) Mukadam and Sampson 2011, Sampson et al 2009

6 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

7 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)

8 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)

9 PAINAD 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)

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11 Screened, does not meet study criteria (1320) Total (1612) Screened, met study criteria (292) 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 Patient had capacity (63) Personal Consultee (215) Professional Consultee (14) Consented, not eligible (34) Assented, not eligible (4) Not suitable (1) Assent form not returned (23) Total Participating with capacity (29) Total Participating Personal Consultee (188) Total Participating Professional Consultee (13) Total Participants in study (230)

12 Cohort characteristics Mean age 87 years, 66% female 76% white British 11% delirium on admission 30% no previous diagnosis 31% 49% House Sheltered 15% 33% 2-5 (functional deficit, difficulties with some ADLs) 6a-c (help putting on clothes, toiletting or bathing) Residential Home Nursing Home 25% 6d-e (double incontinence) 13% 7% 27% 7a-f (speaks 5-6 words, can no longer walk, sit up smile or hold up head)

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14 Management of BPSD 12% started on neuroleptics treatment gap 22.6% mittens or cotsides 15% increased supervision 6% family assistance 1% music, massage

15 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

16 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%

17 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

18 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

19 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

20 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

21 Pain and discomfort Loss of person centered care BPSD Loss of personhood Staff disengagement

22 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

23 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

24 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