Agitation in dementia

Gill Livingston

And some of the team…

• Gianluca Baio

• Julie Barber

• Claudia Cooper

• Briony Dow

• Paul Higgs

• Juanita Hoe

• Gerry Leavey

• Louise Marston

• Stephen Morris

• Rumana Omar

• Nishma Patel

• Penny Rapaport

• Liz Sampson

Funding Acknowledgement:

• This is independent research commissioned by:

UK National Institute for Health Research (NIHR) Health

Technology Assessment Programme:

HTA 10/43/01 and ESRC/NIHR ES/L001780/1

• The views and opinions expressed therein are those of the authors

and do not necessarily reflect those of the HTA programme, NIHR,

ESRC, NHS or the Department of Health.

• The studies are sponsored by UCL. Neither funders nor sponsors

had a role in the study design and the collection, analysis, and

interpretation of data and the writing of the article.

What I will talk about…

• What is agitation?

• Why is agitation important in dementia?

• Drugs?

• Why not just consider neuropsychiatric symptoms as a whole?

• What we did.

• What we found: • What works, who for, what length of time and what setting. • What doesn’t work. • What needs more evidence.

• What it means, why it matters.

• MARQUE: testing the theory and working out the practice.

What is agitation in dementia?

• Agitation is inappropriate verbal, vocal or motor

activity.

• Encompasses “purposeless activity”, shouting out,

physical and verbal aggression and wandering.

• It is behavioural component

not solely emotional.

Why is agitation important in dementia?

• Dementia is common and costly. Most care home residents have dementia, and residential care contributes

substantially to the costs of dementia – currently $818 billion a year.

• Agitation is common, persistent and distressing. • 80% of those with clinically significant symptoms still symptomatic 6 months later.

• Agitation leads to: • Excess cost -care breakdown and care home admission.

• Decreased quality of life.

• Agitation affects family

relationships adversely.

Why we don’t just use drugs.

• Increase cognitive decline; EPSE; mortality.

• Limited efficacy.

• Evidence that haloperidol, risperidone , aripiprazole and olanzapine work sometimes.

• Quetiapine does not.

• Atypicals increase mortality 1.5-1.7 x in first 90 days.

• Haloperidol increases 1.5 x more

Antipsychotics

Other drugs - limited efficacy and risks ++

• Citalopram - increases QT interval and decreases

cognition

• Benzodiazepines increase cognitive decline.

• Cholinesterase inhibitors and memantine

ineffective.

• Analgesics - one RCT (non-placebo controlled)

improved agitation in people with dementia. Effect size

comparable to antipsychotics

• Preliminary evidence with carbamazepine mirtazepine,

• Valproate ineffective

Dextromethorphan-Quinidine on Agitation in AD

• Preliminary 10-week phase 2 RCT in AD

• Efficacious (NPI −1.5; 95% CI, −2.3 to −0.7; P<.001)

• Generally well tolerated.

• low-affinity, uncompetitive N-methyl-d-aspartate

receptor antagonist, σ1 receptor agonist, serotonin

and norepinephrine reuptake inhibitor, and neuronal

nicotinic α3β4 receptor antagonist.

• 7.9 % SAE vs 4.7% placebo – Cummings JE, Lyketsos,C . Peskind E et alJAMA. 2015;314(12):1242-

1254. doi:10.1001/jama.2015.10214.

Non-pharmacological

interventions for agitation in

dementia: systematic review of

randomised controlled trials.

Gill Livingston, Lynsey Kelly, Elanor Lewis-

Holmes, Gianluca Baio, Stephen Morris, Nishma

Patel, Rumana Z. Omar, Cornelius Katona,

Claudia Cooper

DOI: 10.1192/bjp.bp.113.141119 Published 1

December 2014

What we did

1. Systematically review non-

pharmacological

interventions

2. Consider:

1. How long it worked for

2. Severity of agitation

3. Setting in which it works

Analysis

• Calculated standardised effect sizes (SES;95% CI) to

compare studies using a common effect measure.

• used data from the last time point to estimate the SES

• We recalculated results for studies not directly comparing

intervention and control groups

• Meta-analysis impossible as required homogenous

interventions with same outcome measure.

Interventions which worked

- in some circumstances

• Activities

• Music therapy to a protocol

• Sensory interventions

• Supervised person centred care

• Supervised communication skills

• Dementia mapping

Activities

• Five included RCTs implemented group activities in

care homes (e.g. cooking, storytelling) ↓ symptomatic

agitation (SES range =0.2 to 1.05) while in place.

• Individualising activities did not cause significant

additional reductions in agitation.

• There is no evidence for those who are severely

agitated or who are not resident in care homes.

Music therapy by protocol

• Music therapist warm up with a well known song,

listening to, then joining in with music

• In care homes this ↓overall agitation immediately.

• SES 0.5-0.9

• There is no evidence for people with

severe agitation or outside care homes

• No evidence it works over long term

Sensory interventions

• Sensory interventions e.g. massage, massage and

music, multisensory intervention.

• ↓ symptomatic agitation, and clinically significant

agitation, during the intervention.

• “Therapeutic touch” (healing based touch focusing on

person as a whole) was not superior to usual

treatment.

• No evidence about long term or outside care homes.

Person centred care; communication skills;

dementia care mapping

• Six RCTs – in care homes to change paid carer’s

perspective with supervision

• Communication and thoughts, to see and treat people with

dementia as individuals vs task focussed.

• PCC and CS ↓symptomatic and severe agitation,

immediately. SES= 0.3-1.8 and 0.2-2.2 and up to six

months.

• Dementia care mapping ↓severe agitation, SES= 1.4 ,

immediately and 1.5 and four months afterwards .

Interventions which do not work

• Light therapy

• Aromatherapy

• Training family carers in behavioural and cognitive

interventions

Light therapy

• Light therapy hypothesised to reduce agitation

through manipulation of the disrupted circadian

rhythms of dementia, by 30 - 60mins of daily

bright light exposure.

• Three large RCTs showed light therapy increases

agitation.

• The SES was from 0.2 for improvement to 4.0 for

worsening symptoms.

Aromatherapy

• Blinded assessments found ineffective.

• Results of non-blinded studies mixed.

• Aromatherapy not been shown to work for

agitation

Training family caregivers in behavioural

management or CBT for people with

dementia living at home

• Three RCTs

• Ineffective (harmful) for severe agitation

• No immediate or long term effect to decrease

agitation symptoms

Agitation

•Sensory interventions, activities and music therapy

by protocol reduce agitation and decrease

symptomatic agitation in care homes while they are

happening.

•No evidence for those who are severely agitated.

Communication

• Training paid caregivers in communication or person

centred care skills or dementia care mapping with

supervision

• Effective for symptomatic and severe agitation,

during the intervention and for six months. Some

evidence that it helps prevent emergent agitation.

• The standardised effect sizes suggest they are

similarly efficacious.

What is agitation in dementia? Our hypothesis

• Way of communicating feeling bad

• Pain, constipation, thirst, boredom, lack of touch,

loneliness, discomfort

• Brain changes

• Communication and listening plus sensory activity

done well may make the difference

• Clearly best to prevent

• Need effectiveness and cost effectiveness RCT

• Lots more work at home, where most people are

• Adjusted annual cost/person with AD with

significant agitation =£33 075 Vs £28 983

• Excess cost associated with agitation

=£4091/person/year.

• So….agitation accounts for 12% of health and

social care costs of AD each year.

UK cost of agitation in dementia

• The expected excess cost associated with agitation in people

with AD is therefore £2.0 billion a year.

• Potential to save money ++ with effective interventions.

The MARQUE project:

Managing Agitation and Raising QUality of lifE

in dementia

Funded by ESRC/NIHR as part of the PM's 'Challenge on Dementia'

Aims to increase knowledge about agitation in dementia in all settings

What is MARQUE?

MARQUE as Multiple Streams

• Stream 1 - Theoretical understanding of personhood and agitation.

• Stream 2 - Longitudinal study of agitation, quality of life and coping

strategies in care homes.

• Stream 3 - Development and testing of intervention in care homes

• Stream 4 - Qualitative exploration of agitation and family carers coping

at home.

• Stream 5 - End of life and agitation: Ethnographic study of people with

dementia, families and paid carers.

• Stream 6 - Pilot intervention at end of life.

Stream 1 – Conceptualisation of personhood

• Essential components of personhood e.g. agency,

consciousness, identity, rationality and reflexivity?

• Is it a moral absolute of all human beings?

• Is it a matter of degree?

• Kitwood does not distinguish between

the metaphysics of personal identity

and the moral standing of persons.

How are we doing - Stream 2?

Really well!

•We have recruited 97 care home

clusters nationally

•We currently have 4111 people

consented to the study:

– 1602 staff

– 1443 residents

– 1066 relatives

Testing our model - Agitation level in homes Agitation associates

• Less family visits

• More dysfunctional coping in staff

• Staff numbers

• Less activities

• Environment (TESS)

• Possible confounders: Age; severity of dementia;

type of home

• Agitation leads to higher care costs.

• 84 care homes: median age residents age 85; ¾

female

• 45 have a mean score of CMAI of >45

• Median ranges 31-77

• Commonest behaviour: general restlessness

• Least common: eating or drinking inappropriate

substances

• Significant difference between care homes of

nearly each individual type of agitated behaviour

preliminary analysis…

What are we doing next?

Stream 3

•Randomised control study with 20 care homes

•We have developed a supervised manual for staff training

•Currently finalising the manuals and training Research

Assistants to pilot the study

× 20

Development

• Knowledge-systematic review

• Form- START manual (homework, information

with task, relaxation)

• Content - using qualitative interviews with staff

and using their words

• Make it concrete – games, DICE

• Session 1: Getting to know the person with dementia

• Session 2: Pleasant Events

• Session 3: Improving Communication

• Session 4: Understanding Agitation

• Session 5: Practical Responses and Making a Plan

• Session 6: What works? Using skills and strategies in the future

MARQUE

“The residents, you see, they're the same as you are.

They were mums, you know, they were going to college, they

studied, they were driving, they're like us, today they are old,

tomorrow I'm old.”

(Nurse)

Each session will include…

A recap on the previous session

A chance for you to discuss the last session and how you got on

with the exercises.

A discussion about a new topic for that session.

A practical exercise for you to try out between sessions

A new way of reducing stress

Stream 4 - At home

• Qualitative interviews

• Carers helped by:

• Someone to take over care immediately

• Relaxation

• Keeping own interests and friends

• Seeking help immediately

• Not about reducing agitation but coping with it

Stream 5 - Agitation and dementia in hospitals

• One ward:

• nurses not responding

• call bells out of reach

• data e.g. hourly checks fabricated

• One ward staff respond

• Sometimes soothing

• Sometimes shouting

• More response to basic care needs

• Lack of recognition of pain even when patient said it.

Some think people with dementia can’t feel pain

To make managing

agitation as much a part

of care as providing

food, shelter and

hygiene to improve

living and dying with

dementia.

What impact do we want?