Communicating a Diagnosis of Dementia

Professor Rose McCabe*, Ms Jemima Dooley*, Dr Cate Bailey^

Workshop: RCPsych Old Age Scientific Meeting, Thursday 23rd March 2017

*Exeter University ^ East London Foundation Trust

Outline

o Introduction to the ShareD Study o Communication in dementia o Approaches to delivery of dementia diagnoses o Discussing prognosis o Shared decision making o Summary and tips

This is a summary of independent research funded by the National Institute for Health Research (NIHR)’s Research for Patient Benefit Programme (Grant Reference Number PB-PG-1111-26063). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

Shared decision making in mild to moderate dementia: The ShareD study

Professor Rose McCabe

Co-investigators: Dr Nick Bass, Professor Gill Livingston, Professor Stefan Priebe Researchers: Dr Cate Bailey, Jemima Dooley, Dr Penny Xanthopoulou, Dr Maya Soni, Denise Kelly, Dr Abby Russell

9 clinics in London & Devon

LONDON SIX SITES ACROSS

THREE TRUSTS DIAGNOSTIC FEEDBACK APPOINTMENTS WITH

13 CLINICIANS

DEVON THREE SITES ACROSS

ONE TRUST DIAGNOSTIC FEEDBACK APPOINTMENTS WITH

11 CLINICIANS

ShareD recruited individuals who were due to have memory clinic appointments and receive diagnostic feedback in two areas of the UK

Overview of data collected

Observer rated shared decision making (n=74)

Conversation analysis of diagnosis delivery &

decision making

Healthcare professionals (n individuals=15)

Patients (n individuals=7)

Accompanying carers (n individuals=9)

Accompanying carers (n=59)

Patients (n=64)

Videos Interviews Focus groups

215 patients + 192 carers (60% consent rate)

148 Devon 67 London

100 diagnosed with dementia by 24 doctors

74 made decisions about

medication

Variable London Devon N % or mean (SD) N % or mean (SD)

Gender male 28 41.8 82 55.4 female 39 58.2 66 44.6 Age 64 77.09 (9.65) 148 75.49 (10.49) Marital status Single 12 17.9 9 6.1 Married/Partnership 26 38.8 97 65.5 Separated 2 3.0 2 1.4 Divorced 11 16.4 10 6.8 Widowed 15 22.4 23 15.5 Ethnicity White British 34 53.1 136 96.5 Other 30 46.9 5 3.5 Education level School 38 62.3 82 58.2 Further Education 8 13.1 42 29.8 Higher Education 15 24.6 17 12.1

Part

icip

ant c

hara

cter

istic

s

Variable London Devon n % or mean (SD) n % or mean (SD)

Gender male 17 31.48 48 34.29 female 37 68.52 92 65.71

Age 53 55.57 (16.31) 139 65.67 (14.29)

Relationship to patient Spouse/partner 11 21.15 89 64.49 Child 22 42.31 37 26.81 Child in law 2 3.85 1 0.72 Sibling 2 3.85 1 0.72 Friend 3 5.77 7 5.07 Other 12 23.08 3 2.17

Lives with patient? No 34 72.34 39 28.26 Yes 13 27.66 99 71.74

Acc

ompa

nyin

g ca

rer

cha

ract

eris

tics

2040

6080

100

London Devon

Sco

re o

n A

CE

-III (

out o

f 100

)

Cognitive test scores by site

London Devon N Mean SD N Mean SD

ACE-III 41 68.10 18.36 143 78.10 12.11 (MMSE 19 23.11 4.89)

Dementia MCI or VCI No diagnosis Further tests other All 100 47 21 34 21 London 43 9 5 4 6 Devon 57 38 16 30 15

0

10

20

30

40

50

60

70

80

90

100

Diagnosis Of the 215 patients, nearly half (100) received a diagnosis of dementia. The next most frequent diagnosis was mild or vascular cognitive impairment.

Professional seen

0

20

40

60

80

100

120

140

Psychiatrist Geriatrician Specialty doctor Registrar

London Devon

Num

ber o

f con

sulta

tions

The majority of patients saw a psychiatrist. 60 saw a geriatrician.

Features of Communication in Persons with Dementia

o Dementia associated with problems in comprehension, word finding, short term memory (Blair et al, 2007)

o Verbose and circuitous speech in AD (Appell et al, 1982) o Reduced lexical diversity in AD (Fraser et al, 2015) o Long pauses before response (Elsey et al, 2015) (Jones et al, 2016) o Difficulty with responding to compound questions (Elsey et al, 2015) o Turn taking largely preserved, but slower to respond and shorter turns

(Hamilton 1994) (Ripich et al, 1991)

Features of Communication in Patients with Dementia (cont…) o More likely to assent (Sugarman et al, 2007) o Use humour, accounts and face-saving (Saunders, 1998)(Lindholm, 2008) o Reduced participation in consultation, possible causes include:

• Carer or HCP assumptions about incapacity (Karnieli-Miller et al, 2012) • Direct or indirect requests to companion for help (Elsey et al, 2015), including

head turn (Larner, 2012) • Protective caregiving (Hasselkus, 1994) • Pauses or inability to answer (Jones et al, 2016) • Difficulty in securing and holding onto the “conversational floor” (Perkins et al,

1998) o May not recall diagnosis (NB: companions may not either)(Zaleta et al, 2012)

Conversation Analysis – how doctors “design” the diagnosis delivery has implications for the patient’s understanding

3 topics for consideration and discussion: • Test result feedback • Words used (design) of diagnosis delivery • Discussing prognosis

Push to increase diagnosis rates • Timely diagnosis – aid decision making

How do doctors tell people they have dementia?

Cognitive Tests • Average time spent 00:47 (00:05-05:10)

Brain Scan • Average time spent 01:29 (00:05-13:05)

Test Feedback includes indication of the consequences: • Prepares patient for the diagnosis (Maynard, 2003)

• Can help gauge diagnosis reaction

Feeding back test results

Forecasting Indicating the diagnosis as a consequence

Patient Resistance Attributing to age

DR: (name) did the tests again this time .hhh (0.8) it does seem that things have got quite a bit worse with the memory PT: w worse DR: yes yeah I mean you did okay on some of the test but .hh I think a lot of the test you- you- (.) you struggled quite a bit with .h hh so there was quite a big change from (.) from the time before PT: yeah ah (inaudible) you know (0.8) the old age can come [in as well] you know DR: [mm ] DR: yeah I mean I think- I think what we’d say is is that is that (.) i- it is (.) the problems are more than we would expect for someone [of your age] PT: [mm er ]

Repeat evidence from testing Work against resistance

Feeding back test results – e.g. 1

No indication of consequence

Patient misunderstanding

Misalignment

Feeding back test results – e.g. 2 DR: well I can give you a score out of a hundred PT: right (0.4) DR: so if naught was the worst you can do and a hundred was the best [you got] seventy eight PT: [mhm ] (1.1) PT: well that’s not bad [is it ah heh] DR: [we- we’d ] well (0.6) I I kind of think it probably is significant for yourself (0.5) DR: cause although for some people I might think seventy eight’s not- not so bad score (0.8) you you’re smarter than the average person. (.) PT: oo hooray (.) CR: huh huh hah hah hah

Clarify evidence Work against misunderstanding

Use of medical jargon

Feeding back test results PT: I was an accountant actually DR: well- well- well e[xact]ly a[nd a]nd- (0.3) that that’s PT: [mm ] [mm ] DR: the bit (0.3) that (0.3) that got (0.4) got me thinking (0.3) DR: I’ll tell you why because (0.5) the- where you lost points and you lost points on the um (.) memory tests (0.5) a bit on the visuospatial .h but also on on the maths test (.) PT: [(?)] DR: [and] that’s why I thought that was (.) that was probably significant (.) for you [if you know what I mean] PT: [oh right ] yeah ha ha haha oh did I

Positive consequences of test results

DR: the scan didn’t really show any significant change in the brain (0.3) PT: oh right DR: so it- it didn’t show that there was any significant um change in the blood vessels there’s no evidence (.) that you’ve had any strokes at all or anything like that there’s no vascular change (.) PT: right DR: so I think (0.6) uhm what we have to do today is to (.) put together (0.6) three things we have to put together the history of the memory problems [as you] described so PT: [mhm ] DR: well the scan result (0.3) and the results of the (.) memory testing that we’ve done (.) PT: right

Feeding back test results – e.g. 3

Confusing link to diagnosis

Feeding back test results – e.g. 3

DR: and we have to (0.3) think of what most what might be the most likely diagnosis or the most like[ly ] PT: [right] (0.3) DR: explanation for why you’re having these memory problems PT: r[ight] DR: [over] over the last four or five years PT: right DR: and given that your scan hasn’t shown any changes in the blood vessels or an[ything li]ke that (.) .hh I think PT: [right ] DR: the most likely diagnosis is that you’ve- got an early Alzheimer’s dementia

Design of a Dementia Diagnosis

All doctors name dementia to the patient (contrary to previous literature) Majority of doctors deliver diagnosis to the patient (rather than the companion) Common and differing features across the diagnosis deliveries

Re-reference evidence and symptoms Working against resistance

Downplaying severity Softening the blow

Introducing dementia as a medical label Against resistance? Enhancing understanding?

Delivered through

inference Against

resistance, more

sensitive

Delivered directly Blunter,

enhances understanding

Example 1

1 DR: it’s hh (.) they- we we call this combination of (.) you

2 know m memory difficulty and blood vessel change in the

3 brain

4 PT: mm

5 DR: we call that vascular dementia.

6 (.)

Design of a Dementia Diagnosis

Example 2 1 DR: erm (.) so the name that we give to these sorts of memory

2 problems that develop (.) when we (.) er in in older age

3 (0.3) are- (0.4) is that I think that you have a m- a mild

4 form of a condition called dementia

5 (.)

Potential resistance: • Re-referencing evidence and symptoms • Inferential delivery

Potential trauma: • Inferential delivery • Downplay symptoms

Potential misunderstandings: • Re-referencing evidence and symptoms • Direct delivery

Design of a Dementia Diagnosis

• Prognosis not mentioned in 11 (13%) of the meetings • Only discussed in context of medication in 20 (25%)

Prognosis

Non-specific language No explicit discussion of prognosis

Prognosis in Medication Description

DR: I mean in terms of other (0.3) the other thing that we can do is to give you a tablet if you would like PT: mm DR: um (.) a memory table[t ] PT: [ye]ah DR: um which (.) um (1.4) what we find is on average people tend to what it does is it stabilises things for about twelve to eighteen months PT: mhm

• Addressed explicitly in 50 meetings (62%) • 16 asked by patient or family

Prognosis

Explicit discussion of prognosis

Qualifying language

Emphasising slow progression

Downplaying

DR: the nature of the condition itself is that it does tend (0.4) tend to get worse over time (0.8)

DR: but (0.4) that time period isn’t (.) a matter of weeks or months it’s over many years (.) normally that we see (.) changes (.) DR: um (0.4) so (1.2) it’s not so- (.) what I’m not suggesting is that you’re going to see things getting worse very quickly CR: mm DR: but it (.) still it’s quite useful for you and your family to know that it it may be that over time (0.8) things (0.4) you know things might change a little bit

Prognosis

Choice and placement of words affects interpretation:

• Test result feedback • Adding meaning to show patient the consequences

• Diagnosis delivery • Work against resistance and trauma, encourage

understanding • Discussing prognosis

• Explicit vs Medication discussions, downplaying severity, emphasising slow progression

Summary – Communicating a Dementia Diagnosis

SENSITIVITY HONESTY

How can doctors balance sensitivity in delivery with honesty about prognosis, so people can benefit from

timely diagnoses?

Shared decision making by clinician: mean OPTION Mean meeting length 24.36 mins (range 4.32-1.05)

0.0 10.0 20.0 30.0 40.0 50.0 60.0 70.0 80.0 90.0

100.0

N refers to number of consultations where OPTION was scored.

London Devon

Involvement in decision making about medication n=74

05

1015

Freq

uenc

y

0 20 40 60 80OPTIONtotal100

Most scored low - below 50 out of 100

OPTION Scores by Item

Boxplots showing distribution of OPTION5 item scores

Present multiple options

Establish partnership

Describe differences in options

Elicit patient

preferences

Preferences incorporated

into plan?

Shared Decision Making: Cognition, Autonomy, Satisfaction

• OPTION not associated with:

• cognitive test score • patient preference for autonomy in healthcare decisions • patient or carer satisfaction with decision

• OPTION scores lower for those who had more individuals present (p=0.07)

020

4060

8010

0

16min40s 32min20s 50min0minLength of Meeting

OPTIONtotal100 Fitted values

OPT

ION

scor

e

SDM & meeting length

How do doctors recommend medication in memory clinics? CA work in other medical settings show 5 treatment recommendation formats • Assertion • Offer • Suggestion • Proposal • Pronouncement

In different settings recommendations are made differently

Treatment Recommendation Frequency

Suggestion 43% (n=31)

Proposal 25% (n=18)

Assertion 13% (n=9)

Pronouncement 12% (n=8)

Offer 10% (n=7)

• In primary care: 64% pronouncements, 22% suggestions

Frequencies of recommendation types

Assertion followed by suggestion Assertions prior to recommendation in 60% (n=44) cases

Typical treatment recommendation format

Assertion: statement of fact without indication of benefit to patient

Caveat: e.g. not a cure, can have side effects

Suggestion: up to patient to decide, with endorsement from doctor

DR: there are some tablets for (.) for memory problems (0.6) CR: [yeah] DR: [ u]m (.) DR: there (0.3) unfortunately are (.) they’re not a cure but they can (.) [help (.) sort of slow] things down CR: [ (?) ] CR: yeah (0.5) DR: um (0.3) uh I did I mean I (0.4) the- (0.3) that was one thing I wanted (.) to (.) to talk to you a- (0.5) today about is the (.) is the tablet um (0.6) and see whether you would be interested in in in (0.4 trying some tablets for the memory (0.5) PT: mhm (0.4) mm yeah

Typical treatment recommendation format

Assertion Assertion

Uptake from patient

DR: but also there is now medication that we can offer peo[ple] PT: [yes] that’s the- w- I’d like to have that if DR: yeah

Offer: doctor declines to endorse but offers willingness to prescribe

DR: so I mean you can try those tablets if you want to (.) DR: it depe- depends how you feel about it really (0.3) (no PT uptake)

Offer

Proposal: patient invited to endorse doctor’s idea

DR: I think that there is a tablet that (.) could help (0.7) you to (.) to for your memory to be even bett[er] PT: [oh] good good (.) DR: shall we give it a tr[y ] PT: [ye]ah

Proposal

Pronouncement: assertion of what treatment will be without patient choice

DR: so I would want to prescribe a medication for you (.) PT: mhm

Pronouncement

“well” – dispreferred response

Common reason for not taking medication

DR: would you like to think about taking some medication (0.6) PT: yes well (0.9) see how it goes I’ve got a lot of medication I take almost every day

Patient resistance

Treatment Recommendation Frequency

Suggestion 43% (n=31)

Proposal 25% (n=18)

Assertion 13% (n=9)

Pronouncement 12% (n=8)

Offer 10% (n=7)

• 22% patients resist medication – only after suggestions or proposals

• 39% suggestions and 22% of proposals are resisted

Frequencies of common recommendation types

Different Approaches Presenting medication

Emphasising positive effects of medication

Downplaying side effects

Downplaying effectiveness of medication

Example 1 DR: it will slow it down in terms of it getting worse PT: mm DR: um (.) so if you like it stabilises things to a [degree] PT: [yes ] yes DR: um (0.4) .tch there a:re some side effects with it (.) DR: they’re they’re fairly mild and most people (0.6) tolerate it okay

Example 2 DR: so there is evidence that (0.4) about (.) er forty to sixty per cent of people who take the medication probably show some signs of benefit (0.6) DR: so it’s not a magic bullet PT: mm DR: by any means

Tips for Communication:

• Eye contact, other cues to recruit attention of person with dementia • Adjust level of information to degree of cognitive impairment • Linking reported symptoms with diagnosis • Check understanding • Avoid compound questions • Allow time to respond to questions

Contacts and Further Information:

r.mccabe@exeter.ac.uk @RoseMcCabe2 j.m.b.dooley@exeter.ac.uk @MimaDooley cate.bailey@elft.nhs.uk @_parapraxis_ @sharedDMdementia http://medicine.exeter.ac.uk/research/healthserv/shared

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