1
Leeds Institute of
Health Sciences
Faculty of Medicine and Health
A Systematic Review of Non-Drug Treatments for Dementia
Claire Hulme
Judy Wright
Tom Crocker
Yemi Oluboyede
Allan House
July2008
CONTENTS
Page
EXECUTIVE SUMMARY 4
ACKNOWLEDGEMENT 11
SECTION ONE 12
Background 12
Aim 15
Methodology 16
Literature Search 16
Quality Appraisal 18
Dementia Organisation 19
SECTION TWO 20
Review of Effectiveness 20
Interventions 20
Symptoms 21
Interventions and Symptoms 22
Overview of Papers 23
Interventions 23
Acupuncture 23
Animal Assisted Therapy 24
Aromatherapy 27
Behaviour Management 29
Cognitive Stimulation Therapy/Cognitive Training 31
Counselling 35
Environmental Manipulation 35
Light Therapy 37
Massage/Touch 39
Music / Music Therapy 41
Physical Activity/Exercise 47
Reality Orientation 50
Reminiscence Therapy 51
Snoezelen/Multi-sensory Stimulation 53
TENS 57
Validation Therapy 58
SECTION THREE 61
Introduction 61
Interventions 62
Acupuncture 62
Animal Assisted Therapy 63
Aromatherapy and Massage 65
Behaviour Management 70
Cognitive Stimulation Therapy/Cognitive Training 71
Counselling 72
Environmental Manipulation (including lighting) 72
Music / Music Therapy 76
Physical Activity/Exercise 79
Reality Orientation 83
Reminiscence Therapy 84
Snoezelen/Multi-sensory Stimulation 85
TENS 86
Validation Therapy 87
Symptoms or Behaviour 89
Creating a Relaxing Environment 90
Activities 92
Aggression 95
Agitation or Anxiety 97
Depression 100
Hallucinations 103
Sleeplessness 105
Wandering 106
SECTION FOUR 108
Conclusion and Implications for Carers 108
Implications for Future Research 111
Implications for Service providers and Commissioners113
REFERENCES
References (studies/papers included in review) 157
References (report references) 160
APPENDIX ONE (search strategies) 164
APPENDIX TWO (data extraction template) 171
TABLES, MATRICES, BOXES
Table1: Acupuncture 116
Table 2: Animal Assisted Therapy 117
Table 3:Aromatherapy 119
Table 4: Behaviour Management 121
Table 5: Cognitive Stimulation Therapy/Cognitive Training 123
Table 6: Counselling 126
Table 7: Environmental Manipulation 127
Table 8: Light Therapy 129
Table 9: Massage/Touch 132
Table 10: Music /Music Therapy 134
Table 11: Physical Activity/Exercise 140
Table 12: Reality Orientation 144
Table 13: Reminiscence Therapy 145
Table 14: Snoezelen/Multi-sensory Stimulation 147
Table 15: TENS 150
Table 16: Validation Therapy 151
Table 17: Systematic reviews that did not identify 153
any studies for inclusion
Matrix 1: Interventions and Symptoms Evidence Assessment 114
Matrix 2: Interventions, Behaviour/Symptoms, Oganisation 154
Box 1: Reasons for Exclusion from the Review 18
Box 2:Types of Symptoms 21
Box 3: Interventions and Symptoms 22
EXECUTIVE SUMMARY
In the UK there is increasing focus on dementia. A recent report from the House of Commons Committee of Public Accounts acknowledged that dementia, despite its financial and human impact, has not received the same priority status as other diseases[1]. The report goes on to highlight the heavy burden carried by those caring for relatives with dementia at home. Indeed these informal carers deliver most of the care to people with dementia in the UK and many are elderly and frail themselves[2].
Aim
The aim of this report is to help informal carers who want ideas about non-drug approaches for dementia, that they might try or that they could try to access.
Using a two part process, initially a systematic review was carried out in order to addresses the following questions:
- What non-drug treatments work and what do they work for?
- What non-drug treatments might work and what for?
- What non-drug treatments do not work?
The second part of the process searched the websites offour national (UK, USA and Australia) and international (Europe) dementia organisations to identify recommendations or suggestions for non-drug approaches for dementia. In each case the strategies identified from the websites were aligned with the non-drug treatments identified in the systematic review to produce a series of suggestions or ideas for informal carersabout non-drug approaches for dementia, that they might try or access.
Methodology
Seven electronic databases were searched for systematic reviews published since 2001. Screening of retrieved papers was two staged. Titles and abstracts were first screened. The full papers of those studies that passed this initial process were then screened. The studies included in the review went on to a data extraction process and quality assessment. Each study was given a rating of ++ (high) + or – (low). Studies were classified according to intervention. Within each category evidence was provided using a narrative synthesis, supported by evidence tables, drawing out the key features of each review.
Criteria for inclusion of dementia organisation was that they be national/international organisations and that website was freely available, written in English and includes fact sheets, tips or suggestions for informal carers. Search of the websites was carried out by intervention type (as identified in the systematic review) and by behaviour/symptom type (again as identified in the systematic review). Where the web pages included links to, or referred to, additional pages or other sites these were also followed. Using content analysis the recommendations were grouped by intervention type and behaviour/symptom type.
Thirty five papers were included in the systematic review representing 33 studies. Four dementia organisations were included in the second part of the process.
Results
Effectiveness
The evidence from the systematic review suggests three different interventions are effective for symptoms of dementia: Music or music therapy, hand massage or gentle touch and physical activity or exercise. Music or music therapy had potential benefits for behavioural and psychological symptoms (including aggression, agitation and wandering) and cognition; massage for behavioural and psychological symptoms, in particular agitation; and physical activity for behavioural and psychological symptoms (mood, sleep and wandering). However even for these interventions the evidence is mixed or limited. For example, within the papers exploring music or music therapy methodological limitations were highlighted that included weak study designs and small sample numbers. Similarly evidence was presented for the use of massage or touch therapies and whilst there is evidence to suggest massage or touch therapies do work in a reducing agitation in the short term and can help with eating there was no conclusive evidence that massage reduces wandering, anxiety or aggressiveness. The evidence from the review dovetailed with the information given by the dementia organisations. All the dementia organisations suggested strategies that include music, physical activity or exercise and touch or massage.
In respect of non-drug treatments that might work, the majority of interventions fell into this category due to inconclusive results (Animal Assisted Therapy, Aromatherapy, Behaviour Management, Cognitive Stimulation, Environmental Manipulation, Light Therapy, Reality Orientation, Reminiscence Therapy, Multi-sensory Stimulation (MSS), Transcutaneous Electric Nerve Stimulation (TENS) and Validation Therapy). The lack of firm evidence arose primarily through conflicting results and weakness in study design. The implication for carers is that whilst some of these interventions might be useful in managing symptoms of dementia the evidence is not strong enough to support their use. However, some of the interventions in this group formed the backbone of the suggested coping/prevention strategies included in the dementia organisations’ websites.
Within the systematic review there was no evidence to suggest beneficial effects for two interventions, acupuncture and counselling. This was due to a dearth of studies that fit the review papers’ inclusion criteria. No randomised controlled trials were found for use of acupuncture for symptoms of dementia (Peng et al, 2007) and in line with the paucity of evidence none of the dementia organisations suggested its use.
Counselling was included in one paper (Bates et al, 2004).Whilst no evidence was demonstrated for improvements in cognitive function (recall logic, memory and learning) all the dementia organisations referred to counselling and/or cognitive behaviour therapy in the treatment of depression for people with dementia. Although Alzheimer Europe note, any kind of therapy which relies on verbal communication will only be suitable for a small number of people suffering from dementia or those in the early stages[3]
What strategies might carers try?
The focus of the strategiesis behavioural and psychological symptoms of dementia. The strategies are an amalgamation of the findings from the systematic review and recommendations or suggestions from dementia organisations. The strategies are generic in as much as they do not apply to one specific type of dementia.
General strategies:
- To reduce behavioural and psychological symptoms of dementia create a relaxing environment paying attention to noise levels, lighting, music, other sensory stimulants like massage and touch. Pets may also have a calming effect
- In some cases difficult behaviours can be headed off or coped with by using an activity which provides a distraction from the behaviour or stops boredom. Carers might try music activities, activities with pets such as walking or petting the dog, sensory stimulation using massage or other touch therapies or activities that involve reminiscing. Physical activitiescan help use up spare energy, and provide a sociable activity giving routine and structure to the day
The following are activities or techniques that carers might like to try access locally. At the end of each suggestion the behaviour for which it might be beneficial is given in brackets.
- Training course for carers:
- Behaviour management techniques. Carers can also ask for an assessment of key factors that may improve challenging behaviour in those they are caring for (aggression, agitation, anxiety, depression, wandering)
- Techniques of validation therapy (aggression, depression, hallucinations)
- Interventions for the person with dementia:
- Animal Assisted Therapy (aggression, agitation, anxiety, depression)
- Bright light therapy (agitation, sleeplessness)
- Music therapy (aggression, agitation, anxiety, depression, hallucinations, wandering)
- Multi-sensory stimulation (aggression, depression, wandering)
- Reminiscence therapy (agitation, anxiety, depression, hallucinations)
- Counselling or cognitive behaviour therapy (depression)
- Cognitive stimulation therapy (depression)
- Reality orientation (depression)
Techniques or strategies that carers may try at home include:
- Having a pet in the home to encourage relaxation, to provide a distraction, provide comfort, stimulate conversation and provide the opportunity for exercise and social contact
- Use aromas (for example lavender oil) to create a calm environment
- Try massage or touch to soothe, to distract, encourage interaction, provide reassurance, encourage eating, or reduce wandering
- Create a calming environment by removing competing noises, ensuring lighting is adequate, using nightlights for reassurance
- Try using music as the focus of activity, sharing music together, encouraging singing clapping or even dancing
- Use background music to help create a calming environment
- Try different forms of physical activity.This can be formal classes such as tai chi or informal activities like housework
- Try activities that involve reminiscing e.g. looking at old photos or old books or making a family scrapbook
Conclusions
Overall the studies included in the reviews were characterised by weak study designs and small sample sizes. Indeed three reviews were unable to identify any studies of sufficient quality to assess. Many of the reviews included single person case studies or studies of less than five people. Whilst it is not possible to generalise about the effectiveness of different interventions many pointed to potential benefits from the intervention being assessed.
Many of the studies included were based in community residential settings (for example, in nursing homes). Given the increasing number of people now caring for people with dementia in their own home there is a clear need to ensure that research is transferable to this setting. Indeed, the International Psychogeriatric Association (IPA) note that further research is need to explore the relationship of behavioural and psychological symptoms of dementia to the environments in which they occur (IPA, 2002, p7)
Taken together, whilst the volume of studies in this area is encouraging the review points to the need for large, well designed, randomised controlled studies rather than the seemingly piecemeal approach taken at present.
The suggestions or recommendations made by dementia organisations appear to be based on existing research evidence together with suggestions from carers themselves about what works for them. The focus of these suggestions lies in behaviour and psychological symptoms. This is unsurprising given that virtuallyall patients with dementia will develop changes in behaviour as the disease progresses (Rayner et al, 2006, p647).Whilst the suggested strategies appear to be general, rather than specific across many behaviours the consensus opinion is that the incidence of distress can be ameliorated by a calming environment, structured activities and redirection or distraction (Lavretsky and Nguyen, 2006).
Whilst carers can apply some of the 16 interventions in the home setting at little or no cost to health or social care services (for example, playing favourite music), others are likely to require training (for example in hand massage) or instruction (for example, in appropriate exercise routines). Both service providers and commissioners should explore current and future provision of more structured group activities for people with dementia in line with the evidence presented; in particular the provision of group music therapy and group exercise activities that meet the needs of both the person with dementia and their carer.
ACKNOWLEDGEMENT
"This work was made possible by a generous bequest from the estate of Gilda Massari, whose wish was to fund research that produced practical benefit for the carers of people with Alzheimer's disease and related conditions. A version for carers is available from The Dementia Services Development Centre, University of Stirling, "
SECTION ONE
Background
Dementia is used to describe a collection of symptoms, including a decline in memory, reasoning and communication skills, and a gradual loss of skills needed to carry out daily activities (Knapp et al, 2007); it is a non-reversible deterioration in memory, executive function and personality (Warner et al, 2006).
In the UKit is estimated that there are 700,000 people with dementia representing around one person in every 88 (1.1%) of the entire population (Knapp et al, 2007). This figure is set to increase to over 940,110 by 2021 (Knapp et al, 2007). Dementia is most common in older people; in the UK one in five people over the age of 80 years and one in 20 over the age of 65 years has a form of dementia (Knapp et al, 2007).
Typically dementia is reported under four categories: Alzheimer’s disease, vascular dementia, Lewy body dementia and frontal temporal dementia. All are characterised by problems with cognitive functioning and those with dementia are likely to experience behavioural and psychological symptoms (Warner et al, 2006).
Alzhiemer’s disease is the most prevalent type of dementia; in the UK Alzheimer’s accounts for around 6 out of 10 cases of dementia[4]. It is a progressive and eventually fatal disease (Yuhas et al, 2006, p35) of unknown etiology with characteristic neuropathological and neurochemical features[5]. It is characterised by an insidious onset and slow deterioration and involves impairments of speech, motor, personality and executive function (Warner et al, 2006).Alzheimer’s typically affects older people but can begin in younger individuals. Whilst the cause of Alzheimer’s is unknown risks factor include family history of the disease and advanced age (Griffiths and Rooney, 2006).
In the early stages of Alzheimer’s there are signs of memory loss that may include small behaviour changes, forgetting things or repeating things more than usual. In the next stage cognitive impairment becomes more evident and symptoms more disruptive (individuals struggle with activities of daily living and may neglect their personal appearance). In this stage individuals may need reminders to carry out activities of daily living and might have difficulty in recognising familiar places or people (Knapp et al, 2007). Over time, and in the final stages, there is increased dependency on others due to severe impairment of intellectual abilities. As physical functioning deteriorates individuals may become incontinent, unable to feed themselves and bedridden; speech is problematic and the individual may no longer engage in conversation. Eventually total care will be needed(Yuhas et al, 2006).
Vascular dementia, the second most common type of dementia in the UK, results from infarction of the brain due to vascular disease[6]. It is likely to occur suddenly (as a result of a transient ischaemic attack or stroke) and onset is usually later in life. Unlike the progression ofAlzheimer’s disease, vascular dementia typically has a stepwise deterioration (impairment in memory, executive functions, and physical abilities) (Yuhas et al 2006, p36). However, because vascular dementia affects distinct parts of the brain it can leave particular abilities intact; those with vascular dementia may understand what is happening to them (because short term memory impairments are not always part of the initial presentation) which can lead to depression. Disruptive behavioural and psychological symptoms may appear at any stage of the illness. Behaviours that may be present include nocturnal confusion and wandering (Yuhas et al 2006). Progression may be slowed through control of underlying risk factors such as blood pressure (Knapp et al, 2007).
Lewy body dementia is a progressive dementia identified by abnormal structures in the brain cells called Lewy bodies (Yuhas et al 2006). Tiny spherical protein deposits develop inside the nerve cells in the brain interrupting the brain’s normal functioning, affecting memory, concentration and language (Knapp et al, 2007). This type of dementia is characterised by fluctuation of symptoms, the presence of early and prominent visual hallucinations and Parkinsonian symptoms (slow movement, bending slightly forward and shuffling when walking) (Yuhas et al 2006).Progression is more rapid than Alzheimer’s disease but short term memory is usually good.Those with this type of dementia can show marked fluctuations in alertness or cognition from hour to hour or week to week – characterised by confusion during which it is difficult to concentrate and complete tasks. Likely psychotic symptoms include paranoia, delusions and hallucinations which can be disruptive.People with Lewy bodies dementia are at risk of falls because of lack of an effective righting reflex and may experience restless leg syndrome which can interfere with sleep (Yuhas et al 2006).