Catching Your Breath Chasing COPD Management in People with Dementia

Craig Edlin Respiratory Physiotherapist

Complex Care Services

What we will cover Part One:

• Highlights of managing COPD in people with dementia • Diagnosis and Intervention

• Self-management – inhalers, action plans & being active / pulmonary rehabilitation

https://lungfoundation.com.au/health-professionals/guidelines/copd/copd-x-concise-guide-for-primary-care/

• Palliative Care in COPD/dementia

Part Two:

• Theories of learning for people with dementia to support self-management

Carer Involvement

COPD and Cognitive Impairment • Prevalence approx. 32% (Yohannes et al., 2017)

+

• Mechanism likely multifactorial – hypoxia, multi-morbidity, co- prevalent, inflammation…

• Screen early for cognitive impairment • Three D’s: delirium, depression & dementia

(Chang et al., 2012)

http://worldartsme.com/cartoon-hospital-clipart.html#gal_post_91353_cartoon-hospital-clipart-1.jpg; http://mariafresa.net/single/1923176.html

Diagnosis (https://copdx.org.au/copd-x-plan/confirm-diagnosis/)

• COPD is an umbrella term • Phenotype development continues - e.g. 27-28% asthma overlap

• Need respiratory function tests • Laboratory based

• People with dementia often perform poorly on RFTs → under-diagnosis (Frohnhofen et al., 2011)

• Clinical history

• Consider referral to specialist if diagnostic uncertainty or complexity • Pulmonary hypertension / cor pulmonale, malignancy, haemoptysis, frequent

exacerbations/antibiotic unresponsiveness, bronchiectasis, interstitial lung disease

Carer Involvement

Intervention (https://copdx.org.au/copd-x-plan/o-optimise-function/)

• Discuss smoking cessation at every opportunity

• Stepwise approach to medication therapy

• Optimise co-morbidities and non-pharmacological interventions

Carer Involvement

Falls - Sinuses - Sleep - Reflux Swallowing - Continence - Carer Stress

Self-management of COPD

• What is it? • Intervention that is personalised, structured, develops disease

management skills, positive adaptations; with goals of improving health, emotional and social well-being, QoL and forms alliances with HCPs; an iterative process of motivating behaviour change (Effing et al., 2016)

• Can improve HR-QoL & reduce respiratory related hospital admissions (Lenferink et al., 2017)

• Length of intervention matters (Jonkman et al., 2016)

→Action plans, inhalers and being active / exercising

Carer Involvement

Action Plans (https://lungfoundation.com.au/health-professionals/clinical-resources/copd/copd-action-plan/)

• Action plans reduce ED presentations and in-hospital resource utilisation (Howcroft et al., 2016)

• Identify deterioration - personalise symptoms to what patient experiences • i.e. loss of appetite, sputum change, ↓ energy, coughing, sleep

• Take action - Consider appropriateness for at home antibiotics and steroids – self-initiated or through clinician contact

Carer Involvement

Bespoke, simplified action plan

Carer Involvement

Inhalers https://copdx.org.au/copd-x-plan/o-optimise-function/o5-inhaler-technique-and-adherence/

• Which inhaler to prescribe? • Within class devices are clinically equivalent

• Minimise different types of inhalers (Bosnic-Anticevich et al., 2017)

Carer Involvement

htt

ps:

//w

ww

.nat

ion

alas

thm

a.o

rg.a

u/l

ivin

g-w

ith

-as

thm

a/re

sou

rces

/hea

lth

-p

rofe

ssio

nal

s/ch

arts

/in

hal

er-t

ech

niq

ue

-ch

eckl

ists

Inhalers https://copdx.org.au/copd-x-plan/o-optimise-function/o5-inhaler-technique-and-adherence

• Which inhaler to prescribe? • Within class devices are clinically equivalent

• Minimise different types of inhalers (Bosnic-Anticevich et al., 2017)

• Device considerations • Frequency

• Simplicity – number of steps and dexterity required

• Force of inhalation needed

• If possible, trial different devices - get placebos

• Is changing the device necessary

• At some stage nebulised bronchodilators and steroids may be appropriate

Carer Involvement

Inhaler Technique

• Do I look like an idiot?

• Humour me…it is my job

• 50-83% of people have at least one critical inhaler technique error (Sriram & Percival, 2016)

• Check inhaler technique before progressing therapy

• Correct inhaler use reduces exacerbations (Melani et al., 2011)

• Review technique at every opportunity

Carer Involvement

Activity, Exercise & Pulmonary Rehabilitation

• 10% of people with COPD access PR (Holland et al., 2017)

• Up to 50% never attend and 33% do not finish (Holland et al., 2017)

• Main barriers are travel, poor mobility and distressing dyspnoea

• Starting within 2 weeks after an exacerbation might reduce presentations (Matsui, Jo, Fushimi, & Yasunaga, 2017)

• 41% of people accessing PR have cognitive impairment (Cleutjens et al., 2017a) and they drop-out more (Cleutjens et al., 2017b); as do people with frailty (Maddocks et al., 2016)

• People with cognitive impairment get similar benefits (Cleutjens et al., 2017b)

• Generally people with diagnosis of dementia are excluded from studies (Yohannes, 2014)

Carer Involvement

Pulmonary Rehabilitation

• Home based PR is likely no worse than centre-based (Holland et al., 2017; Horton et al., 2018)

• 1-2 weekly phone calls

• Similar social benefits

• Dose - exercised less intensely but more frequently

• For people with dementia • Paradigm shift towards offering home based PR / activity promotion

• Focus on accessing community / meaningful activity based

• Address anxiety, fear of falling and social isolation

• Offer at-home or centre-based pulmonary rehabilitation

Carer Involvement

Palliative Care in COPD

‘Palliative Care’ ‘Supportive Care’ ‘Symptom Management’

Carer Involvement

Three Main Features 1. Symptom Control 2. Future Planning 3. Family Support

Curative Care

Palliative Care

Curative Care Palliative Care Old Model

Newer/better Model

Carer Involvement

Curative Care

Palliative Care

Curative Care Palliative Care Old Model

Newer/better Model

Carer Involvement

https://www.pallvations.com/what-is-palliative-care.html

Where to start • Recognising latter stages of disease or nearing ‘end stage disease’

• ‘Would you be surprised if this person died within a year?’ • Listen to what the patient says – listen and look for ‘hooks’; are they asking for ‘comfort care’

• Starting the conversation • Rapport and explore • SPIKES, NURSE • Respect person’s perspective and right to change their mind

• Advance Care Planning • All clinicians should be aware and comfortable with ACP • Access training – directives, value statements & substitute decision makers

htt

p:/

/ww

w.h

ealt

h.n

sw.g

ov.

au/p

atie

nts

/ac

p/P

ub

licat

ion

s/ac

d-f

orm

-in

fo-b

oo

k.p

df

Carer Involvement Refer to Palliative Care Services

Symptom Management Dyspnoea Action Plans!

1. Stop

2. Position – resting positions

3. Breathing techniques: - rectangle, purse-lipped, fan

4. Inhaler

5. Opioid*

6. Seek help

Carer Involvement

(*evidence for opioids - Barnes et al., 2016)

Part Two: Can People with Dementia Learn?

No and Yes

• Progressive neurological disease

• Ultimately limits ability

• Often requires compensatory strategies • Carer relationship – monitoring and taking action • Simplification of management plan – focus on inhalers, action plans & activity

• However, people with dementia can still learn and relearn… they may require a different approach

• Self-management as a form of learning and rehabilitation

Models of Learning

Repetition Person-centred

Care

Multi-disciplinary

Working

Geriatric Care

Carer Involved

Rehabilitation in Dementia (≈ self-management)

Concept of personhood: Tom Kitwood (1997)

Carer Involvement

Person-Centred Care in Dementia • Personhood:

“a standing or a status that is bestowed on one human being, by another in the context of relationship and social being” (Kitwood 1997, p. 8)

• Symptoms do not always match disease progression

• Emotional and spiritual well-being impacts on function, cognition, mobility, behaviours that challenge and learning

• The environment provided will impact on outcomes – make it as familiar and non-threatening as possible Carer

Involvement

Models of Learning An Oversimplification

‘A theory of rehabilitation without a model of learning is a car without an engine’ (Baddeley, 1993)

Impaired explicit (declarative) memory in dementia / cognitive impairment = errorful learning may not be effective

What other ways might help people with dementia to learn?

Implicit / Procedural Memory

Carer Involvement

Implicit Memory Techniques

• Techniques • Errorless learning

• Constant practice conditions

• Priming

• Examples • Inhaler technique

• Understanding action plan

• Learning to use oxygen equipment

• Taking medications

(Halteren-Van Tilborg,Scherder and Hulstijn, 2007; Donaghey,Mcmillan and O‘Neill, 2010; Dechamps et al., 2011; Middleton and Schwartz, 2012; De Werd et al., 2013; Kleynen et al., 2014; Fish et al., 2015; Kleynen et al., 2015; Stoykov and Madhavan, 2015; Roberts et al., 2016; Voigt-Radloff et al., 2017; Ries, 2018)

Carer Involvement

Use person-centred care and personhood concepts

Where & When

• Context-specific – in their own environment

• Remove distractions

• Tailor to individual – analogies, make relevant / interesting, what they or their carer think will work

• Simplify instructions – minimum needed

• Write it down and put it somewhere it will be seen

• Activity / exercise can goal based but relevant

• People with dementia will likely need more time and repetition

• Patient – health-care professional relationship

Carer Involvement

General Advice

• Consider MyAgedCare for Aged Care Assessment to support carer and patient

• Utilise home visiting services to assist with at home management

Be in for the long haul – you will see better returns

Thank you!

Resources

• https://copdx.org.au/

• https://www.nationalasthma.org.au/living-with-asthma/how-to-videos

• http://lungfoundation.com.au/patient-support/copd/inhaler-technique-fact-sheets

• https://copdx.org.au/wp-content/uploads/2011/08/lungfoundation.com.au_wp-content_uploads_2014_02_08.-Using-your-inhalation-devices.pdf

References Baddeley, A. (1993). 'A theory of rehabilitation without a model of learning is a vehicle without an engine: A comment on caramazza and hillis', Neuropsychological Rehabilitation, 3(3), pp. 235-244.

Chang, S. S., Chen, S., Mcavay, G. J. & Tinetti, M. E. (2012). 'Effect of coexisting chronic obstructive pulmonary disease and cognitive impairment on health outcomes in older adults', J Am Geriatr Soc, 60(10), pp. 1839-46.

Cleutjens, F., Spruit, M. A., Ponds, R., Vanfleteren, L., Franssen, F. M. E., Dijkstra, J. B., Gijsen, C., Wouters, E. F. M. & Janssen, D. J. A. (2017a). 'The Impact of Cognitive Impairment on Efficacy of Pulmonary Rehabilitation in Patients With COPD', Journal of the American Medical Directors Association, 18(5), pp. 420-426.

Cleutjens, F. A., Franssen, F. M., Spruit, M. A., Vanfleteren, L. E., Gijsen, C., Dijkstra, J. B., Ponds, R. W., Wouters, E. F. & Janssen, D. J. (2017b). 'Domain-specific cognitive impairment in patients with COPD and control subjects', International Journal of Chronic Obstructive Pulmonary Disease, 12(pp. 1-11.

De Werd, M. M., Boelen, D., Rikkert, M. G. & Kessels, R. P. (2013). 'Errorless learning of everyday tasks in people with dementia', Clinical Interventions in Aging, 8(pp. 1177-90 [Online]. DOI: 10.2147/CIA.S46809 (Accessed: 10 March 2014).

Dechamps, A., Fasotti, L., Jungheim, J., Leone, E., Dood, E., Allioux, A., Robert, P. H., Gervais, X., Maubourguet, N., Olde Rikkert, M. G. & Kessels, R. P. (2011). 'Effects of different learning methods for instrumental activities of daily living in patients with Alzheimer's dementia: a pilot study', American Journal of Alzheimer's Disease and Other Dementias, 26(4), pp. 273-81 [Online]. DOI: 10.1177/1533317511404394 (Accessed: Jun).

Donaghey, C. L., Mcmillan, T. M. & O'neill, B. (2010). 'Errorless learning is superior to trial and error when learning a practical skill in rehabilitation: a randomized controlled trial', Clinical Rehabilitation, 24(3), pp. 195-201 [Online]. DOI: 10.1177/0269215509353270 (Accessed: Mar).

Effing, T. W., Vercoulen, J. H., Bourbeau, J., Trappenburg, J., Lenferink, A., Cafarella, P., Coultas, D., Meek, P., Van Der Valk, P., Bischoff, E. W., Bucknall, C., Dewan, N. A., Early, F., Fan, V., Frith, P., Janssen, D. J., Mitchell, K., Morgan, M., Nici, L., Patel, I., Walters, H., Rice, K. L., Singh, S., Zuwallack, R., Benzo, R., Goldstein, R., Partridge, M. R. & Van Der Palen, J. (2016). 'Definition of a COPD self-management intervention: International Expert Group consensus', European Respiratory Journal, 48(1), pp. 46-54.

Fish, J. E., Manly, T., Kopelman, M. D. & Morris, R. G. (2015). 'Errorless learning of prospective memory tasks: An experimental investigation in people with memory disorders', Neuropsychological Rehabilitation, 25(2), pp. 159-88.

Frohnhofen, H., Heuer, H. C., Willschrei, H. P. & Falkenhahn, C. (2011). 'Dementia among older in-hospital patients with obstructive airway disease: frequency and consequences', Zeitschrift für Gerontologie und Geriatrie, 44(4), pp. 240-4.

Halteren-Van Tilborg, I. D. A., Scherder, E. A. & Hulstijn, W. (2007). 'Motor-Skill Learning in Alzheimer’s Disease: A Review with an Eye to the Clinical Practice', Neuropsychology Review, 17(3), pp. 203-212 [Online]. DOI: 10.1007/s11065-007-9030-1 (Accessed: 10 March 2014).

Holland, A. E., Mahal, A., Hill, C. J., Lee, A. L., Burge, A. T., Cox, N. S., Moore, R., Nicolson, C., O'halloran, P., Lahham, A., Gillies, R. & Mcdonald, C. F. (2017). 'Home-based rehabilitation for COPD using minimal resources: a randomised, controlled equivalence trial', Thorax, 72(1), pp. 57-65.

Horton, E. J., Mitchell, K. E., Johnson-Warrington, V., Apps, L. D., Sewell, L., Morgan, M., Taylor, R. S. & Singh, S. J. (2018). 'Comparison of a structured home-based rehabilitation programme with conventional supervised pulmonary rehabilitation: a randomised non-inferiority trial', Thorax, 73(1), pp. 29-36.

Howcroft, M., Walters, E. H., Wood-Baker, R. & Walters, J. A. (2016). 'Action plans with brief patient education for exacerbations in chronic obstructive pulmonary disease', Cochrane Database Syst Rev, 12(pp. CD005074.

Jonkman, N. H., Westland, H., Trappenburg, J. C., Groenwold, R. H., Bischoff, E. W., Bourbeau, J., Bucknall, C. E., Coultas, D., Effing, T. W., Epton, M., Gallefoss, F., Garcia-Aymerich, J., Lloyd, S. M., Monninkhof, E. M., Nguyen, H. Q., Van Der Palen, J., Rice, K. L., Sedeno, M., Taylor, S. J., Troosters, T., Zwar, N. A., Hoes, A. W. & Schuurmans, M. J. (2016). 'Characteristics of effective self-management interventions in patients with COPD: individual patient data meta-analysis', European Respiratory Journal, 48(1), pp. 55-68.

Kitwood, T. (1997) Dementia reconsidered: The person comes first. edn. Buckingham: Open University Press.

Kleynen, M., Braun, S. M., Bleijlevens, M. H., Lexis, M. A., Rasquin, S. M., Halfens, J., Wilson, M. R., Beurskens, A. J. & Masters, R. S. (2014). 'Using a Delphi technique to seek consensus regarding definitions, descriptions and classification of terms related to implicit and explicit forms of motor learning', PloS One, 9(6), pp. e100227.

Kleynen, M., Braun, S. M., Rasquin, S. M., Bleijlevens, M. H., Lexis, M. A., Halfens, J., Wilson, M. R., Masters, R. S. & Beurskens, A. J. (2015). 'Multidisciplinary Views on Applying Explicit and Implicit Motor Learning in Practice: An International Survey', PloS One, 10(8), pp. e0135522.

Lenferink, A., Brusse-Keizer, M., Van Der Valk, P. D., Frith, P. A., Zwerink, M., Monninkhof, E. M., Van Der Palen, J. & Effing, T. W. (2017). 'Self-management interventions including action plans for exacerbations versus usual care in patients with chronic obstructive pulmonary disease', Cochrane Database Syst Rev, 8(pp. CD011682.

Maddocks, M., Kon, S. S., Canavan, J. L., Jones, S. E., Nolan, C. M., Labey, A., Polkey, M. I. & Man, W. D. (2016). 'Physical frailty and pulmonary rehabilitation in COPD: a prospective cohort study', Thorax, 71(11), pp. 988-995.

Matsui, H., Jo, T., Fushimi, K. & Yasunaga, H. (2017). 'Outcomes after early and delayed rehabilitation for exacerbation of chronic obstructive pulmonary disease: a nationwide retrospective cohort study in Japan', Respiratory Research, 18(1), pp. 68.

Melani, A. S., Bonavia, M., Cilenti, V., Cinti, C., Lodi, M., Martucci, P., Serra, M., Scichilone, N., Sestini, P., Aliani, M., Neri, M. & Gruppo Educazionale Associazione Italiana Pneumologi, O. (2011). 'Inhaler mishandling remains common in real life and is associated with reduced disease control', Respiratory Medicine, 105(6), pp. 930-8.

Middleton, E. L. & Schwartz, M. F. (2012). 'Errorless learning in cognitive rehabilitation: a critical review', Neuropsychological Rehabilitation, 22(2), pp. 138-68.

Ries, J. D. (2018). 'Rehabilitation for Individuals with Dementia: Facilitating Success', Current Geriatrics Reports, 10.1007/s13670-018-0237-1, pp.

Roberts, J. L., Anderson, N. D., Guild, E., Cyr, A. A., Jones, R. S. P. & Clare, L. (2016). 'The benefits of errorless learning for people with amnestic mild cognitive impairment', Neuropsychological Rehabilitation, 10.1080/09602011.2016.1216000, pp. 1-13.

Sriram, K. B. & Percival, M. (2016). 'Suboptimal inhaler medication adherence and incorrect technique are common among chronic obstructive pulmonary disease patients', Chronic Respiratory Disease, 13(1), pp. 13-22.

Stoykov, M. E. & Madhavan, S. (2015). 'Motor priming in neurorehabilitation', Journal of Neurologic Physical Therapy, 39(1), pp. 33-42.

Voigt-Radloff, S., De Werd, M. M., Leonhart, R., Boelen, D. H., Olde Rikkert, M. G., Fliessbach, K., Kloppel, S., Heimbach, B., Fellgiebel, A., Dodel, R., Eschweiler, G. W., Hausner, L., Kessels, R. P. & Hull, M. (2017). 'Structured relearning of activities of daily living in dementia: the randomized controlled REDALI-DEM trial on errorless learning', Alzheimer's Research & Therapy, 9(1), pp. 22.

Yohannes, A. M. (2014). 'Cognitive impairment and risk for disability in chronic obstructive pulmonary disease', Ann Am Thorac Soc, 11(9), pp. 1445-6.