CARE OF THE OLDER PERSON

CLINICAL FO

Improving sleep management

in people with Parkinsons
Pamela Gregory, Kevin Morgan, Anna Lynall

Pamela Gregory is Research Associate at the Clinical Sleep Research Unit, Loughborough University; Kevin Morgan is Professor
of Gerontology and Director Clinical Sleep Research Unit, Loughborough University, Anna Lynall is Project Manager: Sleep
Management in Parkinsons, Parkinsons UK

Email: p.gregory@lboro.ac.uk

n 2009, Parkinsons UK (Scotland), the Alliance

of Scottish Parkinsons Nurse Specialists, and the
Clinical Sleep Research Unit at Loughborough
University collaborated in the development of a training
course designed to improve the quality of sleep management among patients and carers living with Parkinsons.
The course targeted Parkinsons disease nurse specialists
(PDNSs), and focused on evidence-based approaches to
the assessment and treatment of insomnia symptoms using
psycho-educational and cognitive-behavioural approaches. To support these approaches, the project developed
self-help material specific to Parkinsons, and a curriculum
which recognized, not only the need for high-quality
skills transfer, but also the training time available to most
PDNSs. This article describes the rationale for this training experience, and how it was delivered and evaluated.

Abstract

This article considers the practicality and patient benefits of transferring

evidence-based sleep management skills to community health
professionals. Sleep disturbances are among the most frequently reported
and poorly managed non-motor symptoms in Parkinsons. But, despite their
prevalence, sleep problems in Parkinsons are often under-recognized,
under-diagnosed and inadequately treated. To raise awareness and improve
patient care in Parkinsons, a three-day sleep management course was
developed for Parkinsons disease nurse specialists (PDNSs) practising
within NHS Scotland. The course aimed to transfer skills in health education
as applied to sleep and insomnia; the assessment of sleep; the practice of
sleep hygiene; delivering relaxation methods; the use of stimulus control
and sleep restriction procedures; and cognitive approaches to insomnia
management. Between June 2010 and July 2011, 38 PDNSs and practising
occupational therapists undertook the course. Interviews and evaluations
with patients and professionals were carried out afterwards. Patients
reported a reduction in anxiety over sleep problems, feeling able to manage
their sleep, and having a sense of control over their sleep. Programme
outcomes suggest that the training model used is feasible and practical; the
resources designed for clinical use are practical and relevant; and that the
initiative as a whole represents a valid and affordable investment in patient
wellbeing.

KEY WORDS

Parkinsons w Insomnia w Sleep w Cognitive behavioural therapy

w CBT w Carers

14

Introduction
Sleep disturbances are among the most frequently reported
non-motor symptoms observed in people with Parkinsons
(Lhle et al, 2009). Tandberg et al (1998) found the overall
prevalence of sleep disorders among Parkinsons patients
to be approximately 66%, twice that for age-matched
healthy controls, and 20% higher than for other patient
groups. The precise aetiology of these disturbances is likely
to be multifactorial, reflecting neurodegenerative changes,
dopaminergic medication, other non-motor symptoms
like pain and nocturia, mood dysregulation, and nocturnal
akinesia (Pal et al, 1999; Trenkwalder, 2005). However,
many disturbances share the characteristics of insomnia
symptoms, characterized by problems getting to sleep, staying asleep, early morning awakening, unrefreshing sleep,
and chronic daytime fatigue (Happe et al, 2001; Chaudhuri
et al, 2002; Gulati et al, 2004).
Insomnia symptoms impact not only on the clinical status and quality of life of people with Parkinsons
(Chaudhuri et al, 2002; Gulati et al, 2004), but can also
severely affect the sleep quality and coping ability of primary carers. Smith et al (1997), for example, found that
levels of insomnia among Parkinsons caregivers were
almost twice that found among similarly aged people in
the general population. The detrimental influence on sleep
of providing care for someone with neurological symptoms
was clearly demonstrated by Lee et al (2007), who found
that carer sleep structure improved significantly during
periods of separation (respite) from relatives with dementia.
In Parkinsons, such sleep disturbance contributes substantially to the increased vulnerability of caregivers to depression, feelings of isolation, and ill health (Livingston et al,
1996; Smith et al, 1997; Parkinsons Disease Society, 2008).
In addition to exacerbating daytime fatigue and impairing quality of life, chronically disturbed sleep can also
degrade neuropsychological functioning already compromised by Parkinsons. Wulff et al (2010) argued that in
neurodegenerative disease, sleep disturbances can impact
cognitive and emotional functioning by destabilizing circadian physiology. Optimizing sleep quality could, therefore,
deliver benefits to people with Parkinsons, in terms of
clinical stability and emotional wellbeing, and to carers, in
terms of coping, stamina, emotional stability, and general
quality of life.

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Sleep management in
routine clinical practice
The evidence suggests that the appropriate management
of disordered sleep in Parkinsons is hindered not only by
restricted treatment options, but also by the relatively low
priority afforded to sleep and sleep education in clinical
training and practice (Medcalf, 2005; Korczyn, 2006). It
follows, therefore, that sleep management in Parkinsons
would benefit from a broadening of evidence-based treatment options with raised levels of awareness about both
the need to treat, and the treatability of sleep symptoms.
This approach would be in line with the National Institute
for Health and Clinical Excellence (NICE) guideline for
Parkinsons Disease (2006), which rates the condition as
more than a movement disorder; recognizing how nonmotor features impact on quality of life, the guideline
encourages the development of improved services for people with Parkinsons and their carers (Stewart, 2007). This
guideline, together with the body of evidence in favour of
further non-pharmacological interventions to help patients
with Parkinsons, supports the implementation and evaluation of a dedicated sleep management programme for
this patient population. Recognized by Parkinsons UK as
crucial in the support they provide (Parkinsons Disease
Society, 2007), the Parkinsons nurse specialist is ideally
placed to deliver such a programme.

The psychological management

of sleep disorders
While considerable progress has been made in the drug
treatment of specific Parkinsons-related sleep disorders
such as restless legs syndrome (Spiegelhalder and Hornyak,
2008) and REM sleep behaviour disorder (Aurora et al,
2010), patients and carers living with Parkinsons have
shown less benefit from scientific and clinical developments in the psychological management of insomnia
symptoms. In particular, treatment approaches based on
the principles of cognitive behavioural therapy for insomnia are unfamiliar to most practitioners working with
Parkinsons patients, and remain largely unavailable to
those living with Parkinsons.

What is cognitive behavioural

therapy for insomnia?
Cognitive behavioural therapy for insomnia (CBT-I)
is an evidence-based psychological treatment approach
which recognizes that sleep quality is strongly influenced
by learning, and by styles of thinking. Thus, in chronic
insomnia, excessive periods spent awake in bed diminish previously learned associations between the bedroom
environment and sleep, while the onset of sleep itself can
be repeatedly delayed by extended periods of ruminative,
worried or anxious thinking (so-called cognitive arousal).
CBT-I approaches address these issues by using strategies to
increase sleepiness at bedtime (sleep restriction therapy),
reduce the time spent getting to sleep (cognitive therapy;
relaxation therapy), and reduce the amount of time spent

British Journal of Community Nursing Vol 17, No 1

in bed awake (stimulus control therapy). Typically combined with sleep hygiene (the dos and donts of personal
sleep management), these therapies comprise the CBT-I
package which has proved effective in the large majority
of treated patients (Morin et al, 1999; 2006). Benefits have
also been reported when the principles of CBT-I have
been applied to dementia caregivers (McCurry et al, 1998;
2003), and to patients with Parkinsons (Leroi et al, 2010).

Who usually delivers CBT-I?

Historically, CBT-I was developed and delivered by psychologists working in specialized sleep clinics. However,
recent trials conducted in the UK have shown that primary care nurses (Espie et al, 2001; 2007; 2008) and nonspecialized counsellors (Morgan et al, 2003) can be trained
as both CBT-I therapists, and as advocates for appropriate psycho-educational sleep management programmes.
Building on this evidence, the present initiative was
developed specifically to transfer cognitive-behavioural
sleep management skills into the clinical teams providing routine care and support to patients and carers living
with Parkinsons. While initially targeting the Parkinsons
disease nurse specialists in Scotland, enthusiasm for the
programme within the selected service teams led to the
extenstion of the initiative to include occupational therapists working with Parkinsons patients. At the end of 2009,
there were 289 specialist Parkinsons nurses in the UK
(Parkinsons UK, 2010), 23 of whom were working within
NHS Scotland.

The Sleep Management in

Parkinsons initiative
The core of the initiative was a classroom-based Sleep
Management in Parkinsons course taught at Stirling
Management Centre. Between June 2010 and July 2011,
the course was delivered to 38 health professionals in three
cohorts. The breakdown of course participants by occupational background was:
w Course 1: 10 PDNSs
w Course 2: 5 PDNSs and 12 OTs
w course 3: 4 PDNSs and 7 OTs.
Registration for each course was coordinated by the
project manager, with participants taken on a first-come,
first-served basis.
Three factors influenced the structure and content
of this course: the availability of continuing professional
development (CPD) opportunities within NHS clinical
teams; the assumed level of behavioural sleep medicine
knowledge within the nurse specialist workforce; and
the need to transfer a range of treatment options, from
simple health education, through self-help programmes,
to personally-delivered CBT treatment strategies. These
considerations resulted in a course comprising 3 full days
of instruction (2 consecutive days followed by a third day
one month later) with a curriculum which progressed
from basic sleep knowledge to the theory and practice of
behavioural sleep interventions (see Table 1). Specifically,

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CARE OF THE OLDER PERSON

Table 1. Sleep management in Parkinsons: course structure

Session

Day 1: Content

Objectives

Adult sleep in health

and chronic disease

Sleep structure & sleep patterns

Describe the structure of human sleep

Stages of sleep

Interpret subjective descriptions of sleep

Subjective and objective assessments of sleep

Sleep in chronic disease and caregiving
Sleep in Parkinsons
disease

Sleep disorders in Parkinsons

Parkinsons drugs and sleep
Caregiver sleep in Parkinsons

Describe how Parkinsons specifically

affects the sleep of patients and caregivers;
the effects and side effects of Parkinson
medication in sleep structure and quality

A Users Perspective

An overview of what it is like to experience sleep

problems as a carer

Understand the impact of Parkinsons on

caregiver sleep; the value of sleep therapy
for those living with Parkinsons

Sleep management in
chronic disease: an
overview

Approaches to treatment

List and compare the main evidence-based

treatments for insomnia symptoms

The Assessment
Process

Using the PDSS

Sleep hygiene
Psychological approaches and Cognitive
Behavioural Therapy for Insomnia (CBT-I)
Assessing sleep quality and sleep efficiency

Assess and evaluate sleep structure and

sleep patterns in patients and caregivers

Identifying targets for intervention

The use of medication
in Parkinsons sleep
management

How Parkinsons medications can affect sleep

The beneficial effects and side-effects of hypnotic drugs

Describe the main advantages and limitations of currently prescribed hypnotic drugs

Day 2: Content
A review of basic
counselling skills:
delivering CBT-I

Negotiating behaviour change

CBT-I and Sleep

Management: Steps 1
and 2

Improving sleep hygiene

Stimulus control procedures: theory and

practice

Sleep cues and bedrooms

Relaxation strategies
in sleep management:
theory and practice

Progressive muscle relaxation autogenic training

Case studies

Putting it all together

The use of listening and challenging skills

Plan the first 2 stages in a CBT-I programme

Improving sleep schedules

Sleep restriction: theory and practice
Plan the third stage in a CBT-I programme

Improving sleep efficiency

Resistance
Being positive

Plan and implement a behavioural programme to improve sleep quality in

Parkinsons

Assessing outcomes
When to stop
Day 3: Content
Participants debrief

Discussion of value of Training Days 1 & 2

Sharing experiences to date

Cognitive Theory:
Thoughts, feelings and
sleep onset

Cognitive arousal and sleep onset

Background to cognitive therapy

Understand the relevance of cognitive

theory to sleep management

Cognitive approaches
to insomnia

The relationships between thoughts, emotions

and behaviours

List 3 cognitive strategies useful in managing chronic insomnia

Working cognitively with patients to improve

sleep

Integrate cognitive principles into clinical

practice

Case examples and practice

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instruction was designed to transfer skills in:

w recognition of sleep problems in Parkinsons
w health education as applied to sleep and insomnia
w Assessment of sleep
w Practice of sleep hygiene
w Use of stimulus control and sleep restriction procedures
w delivery of relaxation methods
w cognitive approaches to insomnia symptom management.
The course was delivered by a multidisciplinary team with
expertise in clinical psychology, behavioural sleep medicine, neurology, and geriatric medicine. Presentations also
included the carer and patients perspective. To complement
the classroom-based training and support service delivery,
course participants were also provided with a portfolio of
resources which included:
w A self-help CBT-I programme comprising six booklets,
which were based on the structured psycho-educational
programme used by Morgan et al (2010), modified specifically for use in Parkinsons
w A standardized sheet of sleep hygiene advice: a simple
guide to the dos and donts of managing sleep
w A standardized sleep diary for patient use. A sleep diary
is used to record bed times, getting-up times and times
awake during the night. From this, it is possible to work
out sleep efficiency. For example, if someone is in bed
for a total of 8 hours but asleep for only 4 hours, their
sleep efficiency would be only 50%. Sleep efficiency is
based on the simple assumption that we go to bed in
order to go to sleep
w CD providing relaxation/visual imagery instructions for
patients
w Patient information sheets explaining the practice of
relaxation, stimulus control and cognitive approaches
w Key sources of evidence and clinical guidance relevant to
NHS practitioners and providers.

Homework and experiential learning

Two weeks before each course, participants were sent the
course textbook (Morgan and Closs, 1999), a detailed
programme, and recommended pre-reading linked to
each topic to be covered. In addition, each participant was
provided with an Actiwatch (a small wrist-worn device)
to record their own sleep patterns. The Actiwatch was
then worn by each participant until their arrival for the
first days instruction, at which point the sleep data were
downloaded, and consent was obtained to include each
participants sleep record in a group (experiential) learning
session. In this session, links were discussed between the
sleep patterns displayed and the participants account of
their sleepwake schedule for the period covered.

Evaluation of training and resources

This was an outcomes-based evaluation that recognized
that the deployment of behavioural management training
would vary according to service needs and capacity, from
raising clinical awareness to delivering one-to-one therapy.

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All participants were asked to complete a course evaluation at the end of the third day of training, and approximately 3 months after completion of the training course. Of
the 38 health professionals trained, 27 (cohorts 1 and 2) were
interviewed using a semi-structured interview protocol.
Interviews were conducted face-to-face or by telephone,
and audio-recorded and transcribed. Analysis focused on
qualitative responses to specific items, and the identification of more general themes. The 3-month post-training
evaluation assessed the following specific areas: satisfaction
with training; rated clinical utility of training and self-help
material; use and clinical impact of the training and self-help
material, and perceived user value of self-help material. Two
members of the project team conducted the interviews.

Patient evaluation of the sleep

management programme
People with Parkinsons who had taken part in the sleep
management programme with the Parkinsons nurse or
occupational therapist were also asked to complete a
post-intervention questionnaire. The questionnaires were
administered by a member of the Parkinsons clinical
team and mailed back anonymously to the researcher at
Loughborough University. Patient evaluations are summarized in the included case studies.

Results

End-of-training questionnaire evaluation

Responding to the question How satisfied are you with
the training you have received? on a scale of 15 (where
1=very poor and 5=excellent), 26 rated satisfaction as
excellent and one as good.
The main themes emerging from the end-of-training
evaluations were:
w good flow and delivery of topics
w clear relevance to clinical practice
w satisfaction with pre-course reading material
w appreciation and perceived clinical relevance of learning
progressive relaxation techniques.
Participants also commented favourably on the informality of the training, the opportunities for discussion and questions, and the opportunity to listen to the carers perspective
of living with Parkinsons-related sleep disturbances.

Three month post-training evaluation

There were high levels of reported satisfaction with the
training after 3 months, with the majority of course participants rating the training as meeting all expectations. In
summary, participants reported:
w an improved understanding of sleep structure
w improved knowledge of sleep in health and disease
w greater professional confidence to raise, discuss and
respond to sleep issues with patients.
Analysis of the semi-structured interviews identified
aspects of the course content and clinical resources which
were particularly valued by participants. Most participants
commented on the value of receiving information on nor-

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CARE OF THE OLDER PERSON

Case Study 1
This case study illustrates the impact the sleep management programme
can have on sleep efficiency.
Mrs A is a 69-year-old lady who was diagnosed with Parkinsons in 2000.
With sleep medication (Temazepam) she was able to get around 23 hours
sleep a night. She would lie awake in bed, often for 4 or 5 hours, and if she
couldnt sleep she would read in bed. Her sleep efficiency score was 62%.
Mrs A undertook the sleep management programme for 6 weeks with the
support of her Parkinsons nurse specialist. She removed the books from
her bedroom and took the advice to invest in an MP3 player to allow her to
listen to relaxing music when she gets up at night. If she cant sleep or finds
returning to sleep a problem, she now leaves the bedroom.
She is also now better able to cope with time spent awake during the
night, but this has actually reduced. She can now have around 56 hours of
decent quality sleep and reports feeling the benefit of this. Her sleep efficiency score has risen to 84% after 6 weeks, and she finds that she is also
better able to cope mentally during the day.

mative changes in sleep across the human life span, with the
majority agreeing that such information had helped them to
engage with patients and address unrealistic expectations of
sleep. Indeed, the acquisition (through the course) of confidence to engage with patients about sleep and sleep issues
was frequently cited as a course benefit.
The CBT-I self-help booklets were also consistently rated
as very useful, providing an excellent way of reinforcing
sleep management messages delivered by nurses and occupational therapists in clinical consultations. Finally, from
semi-structured discussions about the assessment resources
provided to all course participants, it was clear that the most
used, and most highly valued resource was the patient sleep

Case Study 2
Mr F is a 62-year-old man who was diagnosed with Parkinsons in April 2011
and reported problems with his sleep.
He worked through the sleep management programme at the pace of two
booklets per week and completed the six booklets within 3 weeks. After
2 weeks he reported improvements and an increased knowledge about
managing his own sleep. By the end of the programme he is now getting to
sleep faster, waking less during the night, and if he is unable to sleep, or get
back to sleep, he is getting up. Alongside the improvement in his sleep, he
reports the impact that it has made on his daily life:
It has taken away any anxiety about my sleep in relation to my condition
and helped me to take a more positive approach to manage my sleep difficulties.
I now understand a range of steps to take to achieve improved sleep and a
range of reasons why I might not be achieving the quality of sleep I desire.
Asked whether he would recommend the programme to other people with
Parkinsons suffering with poor sleep, he said, Yes, I would have done! I
would also recommend the programme to anyone who suffers with poor
sleep whether with Parkinsons or not.
Mr F also wanted to highlight other comments about the programme:
I liked how the programme brought all the research together promoting
the facts and dispelling the sleep myths. The tone was very positive and
the programme put my difficulties into some sort of perspective for me. It
took away much of my sleep anxiety. The emphasis on quality rather than
quantity of sleep seemed so simple once presented to me! I thought that the
density of content and the pace of delivery were very sound.
I feel I have a straightforward programme which I will revisit in future years
as required.

18

diary.The diaries proved to be popular with patients too, and

allowed both practitioners and patients to discuss sleep problems, as well as possible solutions, against a common, shared,
profile of sleep. Diaries also allowed patients to monitor their
own progress.

Patient evaluation
As part of the 3-month post-training evaluation, health
professionals were asked if they had any patients who, having completed the programme, might like to give feedback
on the self-help material. It was left entirely at the health
professionals discretion. Not all patients who had taken
part completed the entire programme or the evaluation.
Some patients worked through only certain parts of the
self-help material or were given advice related to their
specific sleep problem. This reflects the flexibility of the
programme and the way in which health professionals
could tailor the use of the self-help material to individual
patients needs and abilities.
Those patients who were interviewed after completing the
programme generally reported:
w satisfaction that someone was taking their sleep problems
seriously
w a reduction in anxiety over sleep problems
w an improved sense of control over their sleep
w improved sleep efficiency (the proportion of time spent
in bed asleep)
w in many cases, improved quality of life.
Transcripts from three patients interviewed are presented
here as case studies.

Conclusion
This programme demonstrates that cognitive behavioural
sleep management skills, effective in the management of
insomnia symptoms among older patients with chronic
conditions, can be successfully transferred to non-sleepspecialist practitioners, and integrated into routine clinical
practice. In addition to the training being absorbed into
practice, practitioners reported a sharing of information
with colleagues, resulting in raised levels of awareness of
sleep issues among teams. Programme outcomes suggest the
training model used is feasible and practical; the resources
designed for clinical use are practical and relevant; and that
the initiative as a whole represents a valid and practicable
investment in wellbeing among Parkinsons patients.

Limitations of evaluation design

The qualitative methodology could have been augmented
by formal metrics to capture levels of knowledge and
patient benefit before and after the taught course. It is also
acknowledged that the qualitative assessment could have
been more ambitious, perhaps including a larger sample
size, but the geographical spread of patients across Scotland
presented special difficulties. However, despite these limitations, the authors are satisfied that the results reported are
adequate to demonstrate the utility of the taught course
and consequent patient benefit.

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CARE OF THE OLDER PERSON

Case Study 3
Mr D is a 79-year-old gentleman who was diagnosed with Parkinsons in
1998. He found the biggest help was the distraction technique; he was
taught that by repeating a meaningless word like the at irregular time
points (i.e. repeating thethe, the) helped him to stop the worrying
at night.
After working through sleep issues with his occupational therapist, he
reports a better quality of sleep, getting to sleep quicker and having a longer sleep. This improvement has had an impact on his life:
Oh yes, Im not as crabbit. Im getting out more and going out to the shops
with my wife.
The impact on Mr Ds daily life has meant he is getting back to wanting to
go out with his wife, going out for lunches; hes not as tired as he used to be
and not napping as much.
When asked whether there were any elements of the information that he
found particularly helpful, he said he uses all of them periodically, and
keeps them at the side of his chair for easy access when he wants to
read them. He would also recommend the programme to other Parkinsons
patients.

Further work
This programme of sleep management skills transfer is
relevant to a wide range of health professionals and could
benefit patients reporting sleep difficulties associated with
many chronic conditions. The programme has also been
delivered to psychological wellbeing practitioners, counsellors, and to primary care specialist nurses to complement
their clinical skills.
Within most patient groups, chronic sleep disturbances
can impair quality of life and delay recovery and rehabilitation. It is reasonable to conclude, therefore, that educational
programmes which raise awareness of sleep management
issues, and transfer evidence-based sleep management skills,
have relevance to all community nurses and health professionals who regularly encounter co-morbid insomnia symptoms among their patients. 
BJCN
Acknowledgements: The project team wishes to express their
appreciation to the Long-Term Conditions Alliance Scotland and
Parkinsons UK for making the funding available. Thanks also
to the patients, families and health professionals who took part in
this programme.

LEARNING points
w
Sleep disturbances are among the most frequently reported non-motor
symptoms observed in people with Parkinsons
w
The overall prevalence of sleep disorders among Parkinsons patients is
approximately 66%, twice that for age-matched healthy controls, and 20%
higher than other patient groups
w
Despite their high prevalence, sleep problems in Parkinsons are underrecognized, under-diagnosed and inadequately treated
w
Clinical trials have demonstrated that primary care nurses and counsellors
can be trained as both CBT-I therapists, and as advocates for improved
sleep management

20

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