Using Communication to Enhance Therapeutic Interactions With People Living With Dementia
Authors: Adrian Binduga, Lindsay Cartwright, Deirdre Ní Dhuinnín, Maria-Ashley Karaliolios, Kevin O'Brien and Selby Tunney
- 1 Introduction
- 2 Dementia
- 3 Communication to enhance therapeutic interaction:
- 4 Attitudes and Beliefs
- 4.1 Behaviour
- 4.2 Pain and Dementia
- 5 The Environment
- 6 Exercise Interventions
- 7 Use of technology in dementia
- 7.1 Assistive Technology - a general overview
- 7.2 The awareness of AT devices and solutions, and codes of practice.
- 7.3 Various purposes of using AT in dementia care
- 7.4 Use of Assistive Technology to enhance therapeutic interactions
- 7.4.1 Use of technology in language and communication disorders
- 7.4.2 Assistive Technology for cognition and Augmented Alternative Communication devices
- 7.4.3 Use of Assistive Technology in hearing impairments
- 7.4.4 Low-tech tools and devices enhancing communication and interaction
- 7.4.5 High-tech tools and devices enhancing communication and interaction
- 7.4.6 The future of AT in dementia
- 7.5 Conclusions
- 8 Conclusion
- 9 References
Currently, ‘older people occupy 2/3’s of National Health Service (NHS) beds, and 60% of those admitted will have or will develop a co-morbid mental disorder during the hospitalisation’ (: p. 38). Dementia is the most commonly occurring psychiatric condition experienced by older people in hospital (31%), followed by depression (29%) and delirium (20%) (). With an increasing ageing population, there is a greater demand for health care professionals to possess the appropriate education, abilities and beliefs to appropriately care for this demographic (). As part of NHS 2020 Workforce Vision it has been determined that by 2020 there will be 72% more over 65’s with dementia, and by 2033 approximately 24% of people will be over 65 and 12% will be over 75 (). With this increased burden on the NHS, physiotherapists must be able to execute care in the most effective way possible.
Therapeutic interactions have been identified as those that ‘facilitate emotional comfort through the enhancement of patient personal control’ (). Personal and professional therapeutic interactions have been identified as promoting psychological and physical well-being. Therefore physiotherapists must be able to apply this ‘duality of healthcare, where elements of professional competence are linked with a caring interpersonal relationship for it to be perceived as therapeutic’ (). As communication with those living with dementia can often be affected, it is important to ensure that the physiotherapist is effectively interacting with the patient to promote best possible outcome and patient centred care.
Often individuals can feel inhibited or intimidated working with those living with dementia if not thoroughly prepared prior (). ‘It has also been found that the more training a professional has about managing a particular patient group, the more satisfied they are with their job, and that attitudes and level of stress are improved’ (: p. 351). Therefore this page is intended for students or current physiotherapists with limited experience with those living with dementia to improve their therapeutic interaction with this demographic. This Wiki will address the following learning outcomes:
|LO 1||Identify the pathophysiological mechanisms that may hinder physiotherapy interactions with people living with dementia|
|LO 2||Discuss and justify the knowledge, skills, behaviours and values which are required by physiotherapists to employ more effective therapeutic intervention strategies for people living with dementia|
|LO 3||Critically reflect upon professional experience with people living with dementia and analyse the implications of implementing therapeutic interaction|
|LO 4||Critically evaluate the methods that promote therapeutic interaction that facilitate person centred care with people living with dementia|
In recent years dementia has become an increasingly common disorder of mental processes that can lead to a wide range of clinical features including memory loss, mood change, and eventual difficulty with day to day activities and the inability to self-care. However, the use of the term dementia is more of a generalization than a disease in itself as many conditions are associated with dementia. By definition, it is characterised as a chronic or persistent disorder of the mental illnesses caused by brain disease or injury and is marked by the progressive deterioration of multiple cognitive functions, the most common being memory disorders, personality changes, and impaired reasoning . To date, the two most common forms of dementia are Alzheimer’s disease and Vascular dementia. Currently, the exact mechanism that initiates the disease process remains unclear, however there have been several studies done that have come to a similar consensus on the pathology of the development of dementia 
There have been several models of the pathology of dementia proposed and/or substantiated in the last decade. The key is to understand that various routes within the brain pathways can exhibit certain degrees of deterioration which can lead to the development of dementia.
Dementia is a degenerative disease which are often classified as proteinopathies, as the mechanism of pathology is the deposition of abnormal proteins in the brain. These detrimental changes in brain protein structure and function are distinguishing features. The result is the promotion of misfolding, aggregation and deposition as insoluble amyloid plaques (). This is perpetuated as normally soluble proteins misfold into an abnormal pattern and change into insoluble fibrillary amyloid (). The ‘neuritic plaques, neurofibrillary tangles and areas of degeneration proliferate first in the hippocampal complex, and increasingly in cortical areas including the frontal lobes’ (: p.210). The consequences of which are impairments in emotion and memory function.
As indicated via the pathophysiology of the neurodegenerative process, the clinical symptoms exhibited indicate a degenerative process located at the presynapse resulting in neurotransmitter deficiency (). The progressive deterioration of cognitive functioning is exhibited as a result of morphological changes in cortical cells and reduced levels of various neurotransmitters, acetylcholine in particular. The implications of this result in the inability to activate muscles and may lead to decreased functional abilities as acetylcholine is a key neurotransmitter involved in muscle activation.
Protein oxidation is also a mechanism of degeneration that may influence an altered sensitivity to proteolytic degradation and increased tendency to form insoluble aggregates in the brain (). Oxidative protein damage has been linked to abnormal protein deposits within the hippocampus which is strongly associated with memory impairment and cognitive dysfunction in dementia and has already been implicated in the pathogenesis of Alzheimer’s disease, Parkinson’s disease, Huntington’s disease, dementia Lewy body, and ALS ().
Although dementia is usually associated with loss of dopaminergic neurons, a decline in substantia nigra neurons and presence of Lewy body inclusions in some remaining neurons are the hallmark findings seen in the final stages of the disease (). Throughout the course of the disease, deficits in the memory systems become increasingly severe (), therefore it is extremely important to adapt our ways of working with patients and tailor them to the current situation in order to achieve a positive interaction.
There is no single test to determine if someone has dementia. However, physicians are able to diagnose Alzheimer's and other types of dementia based on a careful medical history, a physical examination, laboratory tests, and the characteristic changes in thinking, day-to-day function and behavior associated with each type. Currently, the diagnosis of dementia with Lewy bodies is based on detection and quantification of Lewy bodies as there is a consensus among researchers that Lewy bodies are somehow related to neuronal death 5 in the late stages of the disease ().
As dementia is more of an umbrella term, there are various pathologies that contribute to its development. These include but are not limited to: stroke and ischemic encephalopathy (multi infarct or vascular dementia), hippocampal sclerosis, head trauma, demyelinating diseases (multiple sclerosis), neurodegenerative diseases, neuropsychiatric disorders, severe medical illness, and the effects of medications (). Some patients have more than one of the above diseases contributing to the development of their dementia. Research has shown that the majority of patients who undergo autopsy post-mortem with the primary diagnosis of dementia are found to have an underlying neurodegenerative disease, usually Alzheimer’s disease, with a small number having multi infarct dementia ().
Dementia is progressive and irreversible, and those living with this condition experience a decline in their cognitive, social, emotional and physical functional abilities beyond that accounted for by the normal aging process (). The frontal lobe plays a key role in higher mental functions such as motivation, planning, social behaviour and speech production (). Individuals with dementia often present with impairment of the frontal lobe which diminishes working memory by reducing span capacity, limiting attention, and disturbing search and retrieval functions, thereby impairing language comprehension and expression. Due to several regions within the frontal lobe having an effect on working memory, brain injury and pathology can affect certain functions while sparing others ().
To better understand the progressive breakdown in communication, we must first consider what occurs intellectually in normal language expression and comprehension (). The process of verbal communication is an individual’s intention to share information with those around them and involves ‘a linguistic representation that must be activated, sequenced, and programmed for production’ (: p.210). In research done by Bayles () it was found that working memory (WM) is critical in normal communicative functioning because ‘it is the engine of cognition, enabling us to form intentions, hold incoming stimuli in consciousness, reverse received input, activate and access stored knowledge, interpret stimuli, monitor expression and plan action’ (p.210). While ‘storage of verbal material has been shown to activate Broca’s area and left supplementary and premotor areas, spatial information storage recruits right hemisphere premotor cortex and storage of object information activates the prefrontal cortex’ (: p.211). As a result of deficits in working memory, individuals with dementia will often exhibit attentional impairments and disproportionate problem solving and visuospatial difficulties, as well as difficulty with open-ended questions which require searching memory for an answer.
As a result of the pathophysiological mechanisms of dementia, impaired communication is a common feature, therefore physiotherapists must take extra care with this population in order to facilitate a positive therapeutic interaction.
Communication to enhance therapeutic interaction:
Communication in an essential part of human interaction needed to convey a broad range of information, including needs, wishes and feelings. It is considered one of the most important skills in life (). How well one can communicate can have an impact on quality of life (QoL), and the level to which one is able to maintain their sense of identity and independence ().
It is a concept not solely related to spoken word, but also the manner and style in which it is expressed, involving interaction between verbal and non-verbal factors, with listening being one of the most important parts (,). Key components in the patient-practitioner encounter include:
- Verbal Behaviours, including greetings, open- ended and encouraging questions
- Non-Verbal Behaviours, for example body language, facial expressions and gestures
- Interaction Styles, which encompass aspects of both verbal and non-verbal communication simultaneously, such as being gentle, giving information, emotional support ()
- Active Listening– hearing what the person says and feels, and reflecting that information back to display empathetic understanding through paying gentle, compassionate attention to what is said or implied ().
Communication is regarded a corner stone of the healthcare profession and repeatedly appears in national initiatives, professional standards and national guidelines (-) as a vital component in therapeutic interaction and the delivery of care. Effective communication plays a pivotal role in achieving the planned outcomes of several national initiatives such as the 2020 Vision for Health and Social Care in Scotland () and in Scotland’s National Dementia Strategy 2013-16 (). Not only is it vital in achieving such plans, but it is also a core necessity of the professional governing body HCPC as set out in the Standards of Proficiency – Physiotherapists (), where it is outlined that to be proficient as a physiotherapist, one must be able to communicate efficiently. It states that for effective communication, one must:
‘be able to demonstrate effective and appropriate verbal and non-verbal skills in communicating information, advice, instruction and professional opinion to service users, colleagues and others’ 8.1
‘understand how communication skills affect assessment and engagement of service users and how the means of communication should be modified to address and take account of factors such as age, capacity, learning ability and physical ability’ 8.3
‘..be able to select, move between and use appropriate forms of verbal and non-verbal communication with service users and others’ 8.4
‘understand the need to assist the communication needs of service users...’ 8.7
‘recognise the need to use interpersonal skills to encourage the active participation of service users’ 8.8 (, pg 9).
Effective communication also forms the basis of therapeutic interactions () as it is a medium of conveying the information necessary to make the patient feel empowered, secure, involved, and valued. All of these elements are represented in the Standards () and also are vital in the formation of a therapeutic alliance; the success and strength of which is one of the main drivers in patient engagement, compliance and adherence (). It has been said that establishing a quality relationship with the patient is very important when working with those with a progressive disease such as dementia. Furthermore this relationship is thought to significantly contribute to the outcome of treatments (). Considering this, it is no wonder that communication is regarded an essential skill that clinicians need to master in clinical practice to improve the quality and efficiency of care ().
The Standards () also call for physiotherapists to possess the ability to appropriately adjust and modify the communication and language used in interactions with service users to meet their individual needs. This is applicable to the dementia population. All types of dementia effect cognition, and therefore some element of communication. This could be verbal or non-verbal factors, memory related, due to alterations in reasoning or social behaviour, the expression of emotions or even movement ().
Poor communication and collaboration between the patient, family and physiotherapist may lead to a situation where the person living with dementia and their carers are not sufficiently informed about the available care, self-care in dementia, and about the interventions that slow down the disease progression (). People with dementia should not be excluded from any services because of their diagnosis, age, or coexisting cognitive impairments. Those with dementia and their carers should be treated with respect and equality at all times. To facilitate this, health and social care staff should be able to identify and address the specific needs of people with dementia and their carers arising from gender, age, religion, physical or sensory impairments, communication difficulties, or cognition impairments (). Effective and appropriate use of all aspects of communication can facilitate interaction with such a population.
How do physiotherapists communicate with a general population of patients?:
Considering the emphasis placed on communication from governing bodies, theoretical and clinical evidence, it may be beneficial to first explore some evidence on how physiotherapists interact with patients in practice. From the available literature and anecdotal evidence, there is a wide range of techniques and methods employed by physiotherapists, some more effective than others.
Did your reflection consider quantifying the amount of interaction time taken up by you compared to the patient?
Understandably, the balance of talking and listening time between clinician and client varies due to a number of factors ranging from the nature of the conversation to the type of questioning techniques employed. But yet, it is important to consider that non-verbal factors can be just as important as verbal forms of communication in facilitating a therapeutic interaction.
A recent cross-sectional study (), measured verbal communication in therapeutic interactions in the MSK setting, and came to some interesting conclusions. It found that physiotherapists spoke for up to half of the session (50% vs 33%), with less than 1.5% of the conversation focusing on psychological factors. When considering experienced vs less experienced physiotherapists, they found the conversation style differed, with senior physiotherapists using more history/background probes and more advice/suggestion, and less reiteration compared to more junior physiotherapists. Notably, experienced physiotherapists were found to talk concurrently and interrupt patients more often than more junior colleagues (). The cognitive ability of participants was not discussed.
This study may prompt interesting questions about the balance within interactions, and just how effective is the delivery and retention of information in such routine interactions. Under the HCPC Standard () it is said clinicians need to be capable of adapting and modifying their interactions with clients to cater for variations in age, condition and cognition. Is this done enough in daily practice? Would this person-centred approach be more effective in the transmission and processing of information?
Another component to consider is the type of language used. In a non-dementia population, a study set out to explore how a therapeutic relationship is established and enacted by focusing on the use of evaluative language, by both physiotherapists and patients, to inform each other about physical capacity, sensations and emotions (). It was found that the physiotherapists’ focus narrowed in on factual components, such as determining history and exploring the present complaint. The patients were found to emphasise the emotional and psychosocial impact of loss of ability and pain, concerns which were often not seen to be followed up by the physiotherapists.When considering such an interaction with a person with dementia, think about the impact of impaired cognition on both the expression of pain and emotions, and on the processing of information. Furthermore, the study noted that the phrasing and use of language greatly impacted on the patient’s future ability to self-monitor, self-manage and self-evaluate (). Applying this finding to a dementia population highlights the importance of appropriately adjusting communication skills in order to enhance the therapeutic interaction.
How dementia affects communication:
Now that we have looked at the elements and importance of communication, and explored some evidence of the way physiotherapists interact with patients, let’s focus on how dementia effects communication, and consequently what alterations need to be made in order to enhance the therapeutic interaction with this patient population.
The effects of dementia range in severity related to the individual and the disease progression, but can often first appear as forgetfulness. The condition effects memory, language, perception, behaviour and cognitive skills, such as abstract thinking, reasoning and planning (). The effects on cognition can accumulate in a slower speed of processing thought or inability to understand complex concepts, which can impact on communication.
As dementia progresses and worsens, symptoms become more obvious, often interfering with the persons level of independence and ability to engage in interactions with others.
Dementia effects communication in a number of ways. A person may have trouble finding the right word, repeat words or phrases, or become ‘stuck’ on certain sounds or phrases. Those with dementia are likely to have other sensory impairments such as hearing or vision, which can make it harder to communicate. Being unable to express themselves properly, may cause loss of confidence, anxiety, depression or withdrawal (). These effects can impact on the level of care and support received and to combat this, the Alzheimer’s Society offers a ‘This Is Me’ communication tool which can be ordered free (at [email protected]).
Language related problems can manifest in different ways depending on the individual and the staging of the disease, but they do occur in all forms of dementia as the language control centres of the brain are affected. Sings of language impairment include being unable to find the right word, or the use of related or substitute words. In some cases, the person may not be able to find the word at all. Also, a person may have fluent speech, but with no meaning or may use mixed up words or grammar (). As the condition progresses, a person may be unable to express with language, which may be a source of distress to both themselves and their carers. This may mean the person is unable to convey feelings of pain, discomfort or illness. These situations call for the physiotherapist to modify communication, such as facilitating therapeutic interactions through pictures, pointing, or actions ().
Understanding and trust are key elements of any relationship and facilitate positive interaction. Considering the above cognitive effects of dementia, it may be hard for one to develop a sense of trust in another (). Effective communication can overcome this barrier, and create an environment where the patient with dementia works with the physiotherapist towards achieving desired therapeutic outcomes.
Tips for using communication to overcome barriers to therapeutic interaction:
As discussed, dementia can pose as a barrier to communication, which many may find upsetting or frustrating. These barriers can impact a wide range of issues, including the therapeutic interaction between physiotherapist and patient. There are methods and strategies which help facilitate interaction with people with dementia and those who support them, to communicate in a way that is most effective (). These methods may require the physiotherapist to adjust skills, behaviours and the delivery of information such as those discussed regarding the non-dementia patient population. These alterations should meet the needs of the person living with dementia and facilitate and strengthen therapeutic interaction ().
The following are some tips from the Alzheimer’s Society () for using communication to enhance the therapeutic interaction with people living with dementia:
BEFORE YOU SPEAK:
- Environment – good lighting, minimal background distractions
- Attention – get the person’s full attention before beginning
- Position – where they can see you as clearly as possible, eye level is more preferable to standing over the person
- Proximity – sit close, but do not invade personal space
- Body language – maintain an open and relaxed composure
- Time – have enough to spend with the person, if you feel rushed or stressed, take a breath as this will come across to the other person
- Prepare – think about and plan what you will discuss, use the environment to enhance communication
- Timing – take advantage of the time of day the person is most alert
- Fluctuation – days vary, so make the most of the ‘good’ days and find ways to adapt to the ‘bad’ days
- Other needs – for example pain, hunger, should be met before beginning
HOW TO SPEAK:
- Clear and calm
- Pace – slightly slower, allowing time in between sentences for though processing and response
- Tone – avoid speaking sharply or raising your voice
- Brief and succinct – short, simple sentences
- Flow – speak in a conversational style, as opposed to a series of questions
- Talk to them, not about them – be patient and respectful, do not talk as if they are not there, or as you would a child
- Humour – try to laugh together about mistakes or misunderstandings. It can enhance the therapeutic interaction, and relieve pressure. BUT, be sensitive to the person and do not laugh at them
- Inclusion – involve the person in conversations with others, which may require slight adaptations of terms used. This can help a person with dementia to retain their sense of identity and value, while reducing feelings of isolation and exclusion.
WHAT TO SAY:
- Questions – avoid too many, or a complicated format, as this can cause frustration or withdrawal if the person cannot find the answer
- Closed questions – may be more appropriate as open-ended or choice questions may cause confusion
- Focus – stick to one idea at a time. Giving choice is important, but too many options can cause confusion
- Accessible – if the person is finding it hard to understand, break down your message into component parts so it’s more manageable
- Rephrase rather than repeat – also use non-verbal communication as an aid
- Short and often interactions – if the person fatigues easily
- Facilitate or correct? – as the disease progresses, the person may become confused about what is true or not. If they say something that is not true, try to find ways of steering the conversation around the topic, and look for meaning behind what they are saying, rather than contradict them directly
Listening is one of the most important elements of communication, and is more than the physical process of hearing. Active listening is the highest form of listening and therefore is a special communication skill. It requires listening not only for what is said, but also for the intent and feeling of the speaker. It needs to occur in a non-rushed manner, using appropriate body language, showing interest in the speaker’s words (). It is a vital tool for a physiotherapist in communicating with a person with dementia (), as is discussed below:
- Listen – carefully and offer encouragement
- If you don’t understand fully – rephrase what you have understood and check if it is right, the speaker’s reaction and body language is a good indicator of this
- Alternative phrasing – if a person has difficulty with word selection or finishing a sentence, ask them to explain it a different way. Observe their body language, facial expression and how they hold themselves as this can give you clear signals about how they are feeling
- Do not rush – allow plenty of time to respond, as information processing and responding may take longer
- Do not interrupt – as this can break the pattern of thought, so wait
- Expression of feelings – whether sad, or happy; let them express what they are feeling. Do not dismiss worries, sometimes it is best to just listen and show you are there
Non-verbal communication can be a pivotal tool especially as dementia progresses. In the later stages of the disease, it may become one of the main methods of communication. Therefore, it is important that the physiotherapist learn to control and use their own body language to get information across to a person with dementia. It is also important to be able to correctly understand the patient’s body language and recognize what they are saying so that they can be confident in supporting them to remain engaged and contribute to QoL (). The following are some pointers () that may help with this:
- Your non-verbal communication – another person can read your body language, and a person with dementia is no different. Be aware of this as sudden movements or a tense facial expression may cause upset or distress, making communication difficult. Ensure your body language and facial expression match what you are saying
- Personal space and position – do not stand too close or stand over them, as it can be intimidating. Respect the person’s personal space and position yourself at or below eye level, as it will help the person with dementia to feel more involved and in control of the situation.
- Physical contact – can be used to convey your interest or to provide reassurance. It is important to assess the appropriateness of physical contact not only with each individual but also at each encounter.
To correct or not correct?:
Although there is a lack of peer reviewed literature on how to communicate effectively with a dementia patient, and whether or not correcting the patient is appropriate, general opinion states that through continual correction the patient may begin to lose their ‘self concept if they are continually made to feel ashamed or embarrassed’ (: p.1). During the early stages of dementia, it may be beneficial to ‘gently and respectfully remind the individual of facts, unless this has a tendency to upset them’ (: p.1). Otherwise it is best to distract them, change the conversation and ensure that you do not lecture the patient as this can lead to arguments or negative responses (,).
It is also very important to avoid patronizing talk or elderspeak when communicating with this population as it has been found to increase restiveness, can lower self-esteem and increase dependent behaviour (). ‘Resistiveness to care is measured by problem behaviour such as aggression, withdrawal, and vocal outbursts that disrupt care’ (: p.1).
Tips for if a patient forgets conversation or event
- ‘Avoid telling the person they have heard the information before.
- Ask yourself whether it really matters if the person remembers a recent conversation or event. Forcing the matter can makes things worse.
- Set up a regular routine. This can make it easier for the person to remember what is going to happen during the day.
- Encourage them to use a diary or journal to record things that have happened. Pictures and words are useful tools. They can be used to remind the person what they have done, as a conversation starter.
- Include cues and prompts, and try to give context, instead of asking vague questions.
- Consider using reminders such as sticky notes or a wall calendar for one-off tasks, and more permanent reminders for tasks the person does more
- Consider assistive technology devices
- Focus on one thing at a time: giving the person too much information may be overwhelming.
- Keep information simple, and repeat it often (if necessary).
- Reduce distractions such as background noise.
- Keep questions simple and specific, eg 'Do you want tea or coffee?' rather than, 'What would you like to drink?' This helps the person to make a choice by narrowing down options’ ().
Why physiotherapy is important in managing dementia:
Now that you have explored and reflected on the importance of communication and how it is effected by dementia, as well as how physiotherapists generally communicate with patients, along with some tips on how to communicate with those with dementia, it may be beneficial to look at evidence of the successful application of effective communication as an aid to enhance therapeutic interactions with people living with dementia.
Since there is not yet an effective treatment for the disease, there is increasingly more attention being paid to the maintenance of physical ability (). The benefits of physical exercise to people with dementia are well known. These include maintaining and improving independence and reducing falls risk through strengthening and balance work; improving self-confidence, mood, self-esteem and reducing social isolation; and improving cognition, memory while potentially slowing down cognitive decline (, -). Physiotherapy intervention is also cost-effective, resulting in reduced hospital stays with quicker supported discharge ().
While the benefits to intervention are known, so too are the barriers which were previously discussed. Through effective communication, the therapeutic interaction can be enhanced with a person with dementia, and the benefits of physiotherapy can be delivered. Good communication ensures better and smoother exchange of information, and can also help solve the daily challenges relating to patient-therapist interactions ().
This was evident in the findings of a study which examined the results of physiotherapy intervention on improving QoL in patients with dementia to emphasize the importance of communication and collaboration between physiotherapist, patient and carers (). Here, with the combination of physical exercise and communication, the physiotherapists attempted to help the improvement of patients’ physical abilities through exercise, and also to attempt to slow down the deterioration of cognitive abilities by making the tasks functional and therefore getting the patient to understand the process on a deeper level that just pure repetition. Similar studies (-) yielded similar results, where participants who engaged in such physiotherapy-led activity, displayed maintenance or improvement in physical ability, as well as improvements in mood and behaviour.
Attitudes and Beliefs
‘Attitudes are a combination of beliefs, past experiences, and feelings in regard to a concept, person, or object that influence behaviour’ (: p.351). ‘The Theory of Reasoned Action suggests that attitudes influence an individuals’ intention toward behaviour’ (: p.351). Therefore, if an individual has a negative attitude toward a certain demographic, such as patients living with dementia, then they are likely to display unfavourable behaviour, beliefs and feelings toward this demographic ().
‘Patient centred care ensures that patients are equal partners in the planning, developing and monitoring of their care to make sure it meets their needs’ (: p.2). The cornerstone of patient centred care is promoting personhood, which is defined as ‘a standing status that is bestowed upon one human being, by others, in the context of relationship and social being…implying recognition, respect, and trust’ (: p.8). Affording the status of personhood to those living with dementia can often be neglected due to individual’s attitudes and beliefs about the population’s perceived comprehension. However, not providing care with this in mind can present with detrimental consequence (). Providing patient centred care is important as it has been found to ‘improve people’s health and reduce the burden on health services’ (p.3). Therefore, in order to provide patient centred care to this population, it is important for physiotherapists to be aware of any negative attitudes or beliefs they may hold as it could affect the degree of personhood they afford the patient. Here, ensuring that the patient feels comforted and has a degree of personal control is crucial as this population may not as readily be able to communicate their needs, and therefore may not be able to effectively partake in the development of their healthcare.
It has been found across all health care professions that negative attitudes and beliefs exist regarding patients living with dementia (, ). Although research is limited in regards to physiotherapist’s beliefs and attitudes in regards to patients living with dementia, the research that has been done suggests that these attitudes exist amongst physiotherapists as well. Furthermore, these attitudes and beliefs become progressively worse as a patient progresses through the stages of dementia (). In a study by Staples and Killian (), it was found that although‘3/4 s of respondents considered exercise to decrease or delay the progression of dementia’ (p. 356), that therapeutic nihilism did exist, and therapists with negative attitudes toward ageing were less likely to promote aggressive goal setting with older patients. It was found that therapists felt as if they were most effective during the earlier stages of dementia, and were therefore more satisfied with their work (). These attitudes may have been compounded by feelings that as a patient progresses through the stages of dementia, their prognosis for a functional recovery diminishes, and therefore the amount of time utilised for these patients should be limited (). These negative attitudes experienced by physiotherapists may be due to a lack of education with working with patients as they progress through the stages of dementia. It was found that ‘54% of physiotherapists felt that they had inadequate training, education and resources to treat those with later-stage dementia’ (: p.355). As allied health professionals, physiotherapists need to ensure that they do not lose the personal aspect of healthcare, and remember their role is to care for the patient, not just cure. By maintaining this paternalistic biomedical version of healthcare, physiotherapists may end up hindering the functional recovery process. Therefore, attitudes and beliefs can have an effect on patient care and it is important during each interaction with patients that the physiotherapist exudes a positive approach. This is crucial to developing the therapist patient relationship that includes a trusting rapport to ensure that emotional comfort and patient control is achieved.
One reason that patients living with dementia can be deemed difficult to work with is due to their ‘unsettled and at times aggressive or violent behaviour’ (: p. 38-39). This behaviour can be defined as ‘an active attempt to express an unmet need, whether physiological or psychological’ () and can be seen as problematic to staff, and therefore affect their attitudes and beliefs towards the population ().
Behavioural and psychological symptoms of dementia (BPSD) and challenging behaviour
According to Alzheimer’s Society (2016) (,), people with dementia have longer hospital stays and are at a greater risk of accidents, and often suffer from poor quality of care. Hospital admissions can result in worsening of ‘behavioural and psychological symptoms of dementia’ (BPSD)
Behavioural and Psychological Symptoms of Dementia (BPSD) are defined by the International Psychogeriatric Association as 'symptoms of disturbed perception, thought content, mood, and behaviour frequently occurring in patients with dementia', and include aggression, agitation, wandering, verbal outbursts, delusions, hallucinations, apathy and anxiety ().
BPSD often result in challenging behaviour, which puts a strain on the patients, caregivers and staff and is associated with impaired functional ability, poorer prognosis and caregiver burden ().
Often this ‘behaviour is in response to a disruption to their normal routine, causing difficulty and distress’ (: p.42). Krishnamoorthy and Anderson (2011) () propose that this behaviour ‘should be seen as a method of communication, rather than a problem.’
The aetiology of challenging behaviour
According to Krishnamoorthy and Anderson (2011) (, the causes of challenging behaviour can be of physical, psychologic/psychiatric, environmental or communicative nature
- Physical problems: Even minor physical problems such as pain, fatigue or constipation can cause delirium or distress, which may manifest as challenging behaviour.
- Psychological/psychiatric conditions: people with dementia are more prevalent to conditions such as depression, anxiety and psychosis than unaffected population, and if they cannot communicate this, these conditions often manifest in symptoms such as agitation, irritability, poor sleep, withdrawal, non-compliance, clinging to people, etc. People with dementia retain awareness of themselves, and this itself can also result in psychological distress, e.g., patients can be embarrassed over their need of personal care or can get frustrated as they are unable to communicate their needs.
- Environmental factors: patients with dementia are sensitive to change and are slowly adjusting to new environments as it is difficult for them to learn new things. A change of setting from home to a care home or hospital may trigger challenging behaviours.
- Communication difficulties: deafness, inability to express themselves or to understand language can be frustrating as it may limit interaction to non-verbal communication.
Categories of behaviour in dementia
Often this behaviour can be categorized into 4 categories: disengaged, distressed, constructive and neutral ():
Constructive Behaviours ():
- Showing their personhood
- Being sociable
- Form relationships and attachments
- Seeking control
- Trying to take control
- Being assertive
- Purposeful activity
- Gathering other people’s belongings
- Work-like activity
- Expressions of concern for the family carer EX. Trying to get them something to drink’
Disengaged Behaviours ():
- Prolonged inactivity’
Distressed Behaviours ():
- Challenging the system
- Muttering and moaning
Neutral Behaviours ():
- ‘Causing disruption
- Disinhibited use of language
Tips on management of challenging behaviour
Good understanding of causes of challenging behaviour is key in its successful management. Family, friends and carers are often able to read the meanings of certain behaviours and can provide valuable opinions and advice regarding management.
The NICE Dementia Guideline () recommends non-pharmacological approaches to management including aromatherapy, multisensory stimulation, music/dance therapy, animal-assisted therapy and massage.
- a person-centred approach helps to reduce distress;
- it is advisable to stay calm and being in control at all times;
- be empathic but assertive at the same time
- maintain personal space and provide reassurance when necessary;
- use distraction techniques and de-escalation techniques if the patient is aggressive or agitated
- avoid punishment or blame
Actions to Maintain the Personhood of the Person with Dementia (
- ‘Showing warmth to the patient
- Providing occupation
- Promoting dignity for the patient
- Maintaining the link with normal life
- Substituting for them’
Therefore, it is important to try and view these behaviours for what they are, and not let negative attitudes or beliefs affect the way in which the person living with dementia is viewed. Working to promote the maintenance of personhood for those living with dementia is an effective way of managing the disruption to a patient’s normal routine, and thereby enhancing their perceived control over the situation, thus minimizing any disruptive, disengaged, distressed or neutral behaviours.
Pain and Dementia
Pain under treatment is a common and significant problem amongst those living with dementia. It is estimated that ‘25-50% of older people experience pain, and although those living with dementia are equally susceptible, they receive far fewer analgesics than their cognitively intact counterparts’ (: p.12). Difficulties with communicating with patients living with dementia is linked with the under management of pain within this population (). Pain is often expressed behaviourally amongst this population, and when unrelieved can present itself in the following ways ():
|Gait impairment||Decrease in daily activities|
|Decreased appetite||Impaired cognition|
|Sleep disturbances||Verbal aggression|
|Physical combativeness||Social isolation|
‘There are many non-verbal behavioural indicator assessment pain scales that exist that rely on the healthcare professional to observe physiological changes, body language changes and behavioural changes’ (: p.222). Examples of appropriate behavioural pain assessment scales include theAssessment of Discomfort in Dementia Protocol () and the Abbey Pain Scale (). However, the “psychometric properties of many of these tools are only moderate” (: p. 222). Some argue that these scales can be applied validly and reliably if they are appropriately applied, however others argue that the scales rely too heavily upon the experience of the user (). ‘Discomfort displayed may also be of a non-physical nature, as well as the scale does not indicate the nature – either physical or affective or the location of the pain experienced by the patient’ (: p. 222). Therefore, the clinician’s attitudes and beliefs in regards to this population can present with biased results when using these scales.
Use of Psychotropic Medications
It has been found that instead of providing those who display these behavioural pain elements with analgesic medications, psychotropic medications are often prescribed instead (). ‘It has been suggested that these types of medications have been used as a form of restraint, and can also reduce the repertoire of behaviour available to persons with dementia, contributing to excess disability’ (: p.277). ‘Health providers may have a tendency to pathologize the behaviour’ (: p.285) that this population exhibits, and therefore ‘overlook potential meanings and respond reactively with solutions that address the behaviour but not the core problem’ (: p.285). ‘The acknowledgement of personhood in this population is crucial, as it can compromise clinical practice as those that have stronger positive beliefs about personhood in dementia increase the likelihood of selecting analgesics and non-pharmacological interventions and a decreased likelihood of selecting psychotropic medication’ (: p.285). Therefore it is important for healthcare providers to be mindful of ‘their own cultural attitudes to the meaning and communication of the pain experience and pain expression’ (: p. 14). It is important that patients who do not require psychotropic medication are not prescribed it as it can significantly increase a patient’s risk of co-morbidities such as stroke and falls thereby further increasing the patient’s risk of disability and mortality ().
Do People with Dementia Experience Pain Differently
A factor that may also contribute to the under management of pain for those living with dementia, is that they may experience pain differently (). However, it is inconclusive if the ‘pain experience is altered as a result of pain-transmitting nerve function decline, progressive degeneration of brain regions involved in processing nociceptive information, or whether the difference in pain reporting is attributed to impaired communication and memory’ (: p.221). It has been found that those with Alzheimer’s disease have an increased tolerance to pain, and that as cognitive impairment increases so does pain tolerance (). However, this was countered by ‘Cole et al. () who investigated fMRI pain-related brain activity and demonstrated that pain perception and processing were not diminished in Alzheimer’s disease’ (p. 221), further propagating the understanding that those living with dementia are provided with inadequate pain management. ‘These concerns are further highlighted by a potential disruption to the placebo component of analgesic treatment in Alzheimer’s patients’ (: p.221). Therefore, noting behavioural elements of pain as a physiotherapist may be crucial when working with those living with dementia to ensure that their pain is well managed while attempting to restore or maintain function and movement.
Providing person-centred care is a major component of enhancing therapeutic interaction with people living with dementia. To provide person-centred care, healthcare professionals should include the person in decision making, consider the whole person during health promotion opportunities, and take into consideration the care-giving environment and how it impacts on the person’s wellbeing ().
This section will focus on optimising the physical environment, to ensure the person living with dementia receives the best possible care, and gets the most out of a physiotherapy treatment. Often physiotherapy treatments for people living with dementia will take place where they live, either in their home or a long-term care facility, therefore it is the responsibility of the physiotherapist to choose an appropriate environment or modify the current environment to enhance therapeutic interaction.
Lighting of the living or treatment area is an important consideration. Research has shown that people living with dementia benefit from high intensity light levels in terms of circadian rhythm (), sleep patterns (), reducing depression (), and slowing the decline in ADLs performance (); and low light levels can negatively affect their mood (). As a physiotherapist, it is not always possible to change the lighting of a room, however, treatments should take place in a well-lit area. Additionally, physiotherapists and other healthcare professionals should encourage people living with dementia to spend time during the day in well-lit areas, and avoid low lighting if possible until the evening. A simple adjustment in the environment that people with dementia interact with each day in can have both physical and psychological therapeutic effects which enhance their lives.
Temperature can have significant impacts on a person’s comfort levels. High temperature levels in the bedroom and increased time spent there are associated with a lower quality of life for people living with dementia (). Again, a physiotherapist may not have direct control of the temperature of the environment, but it is important to be aware of this association, and encourage this group of people to spend time outside of the bedroom, particularly in nursing home facilities. This can enhance the patient’s physical comfort, which will potentially provide a more therapeutic interaction with both the environment and healthcare professionals they come in contact with.
Noise levels throughout the day, including during physiotherapy treatment should be considered. High noise levels in common areas of nursing homes can cause people living with dementia to show fewer behavioural signs of social interaction (). It has been suggested that excessive noise from various sources (staff members, other residents, and technology) can cause overstimulation in people living with dementia, which can lead to agitation and negative social interactions (). Physiotherapists should keep this in mind when planning appropriate treatment locations, and suitable places to leave patients when the session is over. Physically adjusting the patient’s surroundings can benefit their physical and psychological comfort, providing a more therapeutic environment for them to interact with the environment itself, as well as other individuals.
Interaction with nature and the outdoors has proven to be beneficial to people living with dementia. Having a garden to wander, participate in gardening, or even just to view have a variety of positive outcomes on people living with dementia, including fewer falls, improved cognition, reduced agitation, and improved sleep-related outcomes (). Innes et al. highlight the importance of making outdoor facilities accessible to use by providing handrails, ramps, covered areas and places to sit (). This is useful information to physiotherapists if there is a garden accessible to use, as patients can experience both physiological and psychological benefits (), and these resources can be incorporated in treatment and education to take advantage of available facilities when possible. For example, Innes et al. suggest that accessible, attractive and safe outdoor space creates an opportunity for nursing home residents with dementia to spend time with their families and potentially incorporate physical activity ().
Due to weather, space, and location limitations, access to outdoors and/or gardens is not always possible. Multi-sensory environments (MSE) can be used to engage people with dementia in activity and interventions by stimulating the senses or providing sensory calming effects (). Various lights, textures, and sounds can be found in an MSE. Refer to the picture below for an example of one being used for a person living with dementia (). MSEs have been found to be equally as effective as other nature-related activities (for example, gardening) in terms of improving functional performance in people living with moderate to severe dementia (). Baker et al. found that people with moderate to severe dementia who used an MSE initiated more activities, enjoyed themselves, were more active and alert, and were less bored than previously (). Another study found that using an MSE improved apathetic behavior in people with severe dementia, and the improvements increased when this treatment was used three times per week compared to once per week (). Although physiotherapists may not be involved in constructing a multi-sensory environment, with some creativity, it could be a useful tool to interact with the patient and provide functional exercises and activities in conjunction with physical and psychological comfort.
Creating a homelike environment in a nursing home can encourage residents with dementia to spend more time in communal areas causing them to socially interact with others and their surroundings, as well as initiate activities independently (). Nolan et al. used personal items, such as photos and personal memorabilia in memory boxes outside of residents’ rooms. Not only did it add a sense of familiarity, but it assisted people with dementia in finding their way to their own room (). Moyle et al. found that when residents had photographs and their own pieces of furniture, they had improved quality of life (). A homelike environment can help a person living with dementia feel better psychologically, and physiotherapists can use take advantage of this by incorporating familiar objects into their treatment to enhance the therapeutic interaction with the patient.
Although interior design is not often the responsibility of physiotherapists, it is important to recognise that some physical environments better suit the needs of people living with dementia than others. In practice, physiotherapists may have the opportunity to make recommendations regarding the environment to optimise therapeutic interaction.
Make a note of some simple adaptations that can be used to convert an environment to being dementia friendly. Download the Environmental Auditing Tool from this website and audit the environment you designed or even the one you work in. You may want to revisit your design to make it more dementia friendly.
Campo and Chaudhury recommend congruence between physical and social environments by ensuring staff have flexibility within their schedules to socialise with residents and facilitate interactions between residents as opportunities arise (). This requires all members of the team to be on board in providing a culture that enables these interactions and support from higher levels of management. This can be achieved when staff members of various positions believe that their main obligation was “to see to residents’ well-being” (). As a physiotherapist, physical wellbeing is often the first thing that comes to mind, however it is important to consider the person as a whole, and remember the emotional and mental wellbeing as well.
Music has been reported to be valued by people with dementia (). Whether it is background music or music-related activities, older people with dementia appreciate that music can help them take part in meaningful activities, such as ADLs, and enjoy themselves as they do (). Background music and singing by the caregiver appears to provide opportunities for people living with dementia to interact with others, including care takers and other residents, and leads to improved ADLs (). Music can be included in physiotherapy treatment and many other aspects of everyday life to improve therapeutic interaction for people living with dementia.
People with dementia appreciate involving aspects of the community that are normal parts of everyday life, specifically, having children and animals in the building (). Social interaction with family, society and maintaining an ordinary lifestyle can have a positive impact on quality of life for people living with dementia (), an example of which can be seen in the image below (). Jing et al. recommend involving family in dementia care by providing support and encouragement to family members, pointing out that their involvement can help people living with dementia recall memories, and feel like they are part of a community and even society (). Involving family may be a useful strategy for physiotherapists to use to help the individual remember and be emotionally supported in their treatment and care, making interaction with the physiotherapist as well as the family member more therapeutic.
People living with dementia value the opportunity to take part in activities that they choose and are meaningful to them (). This can be made possible by providing not only the necessary space, but an appropriate support system to ensure people with dementia have the lifestyle that they prefer (). Institutions with specialised workers or more highly trained staff tend to have residents with a higher quality of life (). Jing et al. highlighted that individualised dementia care is crucial in providing higher levels of quality of life (). High quality care was described as person-centred, treating people with dementia with respect and dignity, and being supportive (). Some examples of providing person-centred care are: spending time talking to people with dementia, provide tailored activities for people with dementia, and acting positively towards people with dementia (). There was emphasis on the fact that everyone should carry out these simple actions regardless of whether it is part of the person’s job description (). It was summarised that having supportive staff, and staff that are positive and have confident attitudes towards dementia can benefit the quality of life of people with dementia living in care institutions (). There are programs in place in many hospitals to help staff learn about individuals with dementia who are admitted, so that person-centred care can be provided. The Butterfly Scheme is one that can be implemented hospital-wide ().
It is important to remember that individuals with dementia vary and therefore, there is not one single environment that will meet the needs of everyone (). This means that an environment that accommodates people living with dementia must be adaptable so that each person can remain at the centre of care. Jing et al. suggest that to fully build a dementia-friendly environment, every individual within the community should contribute in some way (). Alzheimer Scotland has provided a simple and efficient way for anyone to contribute, by becoming a Dementia Friend ().
Dementia friendly environments are an integral part of caring for a person living with dementia. Located in the Netherlands, there is a dementia village and it is the only one of its kind at this point in time. This gated village is called De Hogeweyk. It has been specifically designed as a facility for elderly people living with dementia and can accommodate 152 residents and provides 24/7 care (). Hogeweyk is a two-storey facility with seven different lifestyle themes including homey, urban, Christian, artisan, Indonesian, cultural, and goois (upper class). In a study done by Zeisel et al., (), it was found that there was a correlation between control of stimuli and a residential environment (rather than an institutionalised environment) leads to a decrease in aggression, agitation, and depression among people living with dementia.
The facility is government funded and the cost per resident living there is 5000 euros per month, which is not much higher than the cost of a regular care home facility. The focus is to increase the quality of life for those living with dementia by allowing them to do the same things they loved before their illness took its course (). The village has two core principles:  it aims to relieve the anxiety, confusion, and anger that people can experience by providing a safe, familiar and human (not hospital) environment, and  it is all about keeping people active and providing the most normal possible life, reminiscent of each individuals’ formative years ().
Hogeweyk encompasses all the elements of living that an individual would have had prior to the onset of this disease. The key is to offer maximum mobility and the opportunity to lead as normal a life as possible. The vision of Hogeweyk is to offer a more humane, engaging dementia care community where residents can experience life as they once had – making their own choices, performing everyday routine tasks, as well as socialising with people who share similar interests, despite their disease (). The built environment plays a major role in promoting or hindering the health and well-being for people living with dementia, therefore as a physiotherapist it is important to understand dementia from the perspective of someone living with dementia in order to enhance and facilitate a positive interaction.
There are a multitude of interventions, activities and therapies available to people living with dementia to improve interactions with any individual that the may come across in their daily lives. With regards to improving therapeutic interactions between people living with dementia and Physiotherapists, we will look at physical activity and exercise mainly while also looking briefly at other novel interventions like music therapy. We will try to understand if these interventions help to enhance interactions for people living with dementia while conversely trying to understand do good therapeutic interactions enhance any of the above interventions.
There is a dearth of evidence, if any at all which helps us to gain an insight into the effect of any of the above mentioned interventions on promoting positive therapeutic interactions between people living with dementia and their caregivers. However, by looking at the effects of these various interventions on other outcome measures, it is hoped to see some positive correlations between these interventions and therapeutic interaction.
Numerous exercise programs have been developed for relieving symptoms of dementia (-). Muscle strengthening exercises, aerobic exercise, exercise with music, Taichi and hydrotherapy are some of the exercise programs recommended for people living with dementia (). These programs are effective for attention and executive functions but their effectiveness on memory is less clear (). Walking is the physical activity recommended most often due to its ease and association with a low falls risk. Improvement in cognitive function is associated with one to two hours of walking (). It is reported that there is a need to avoid confusion about the diversity of exercise programs in the general-public by suggesting the most effective types and creating guidelines for designing beneficial exercise programs (). By removing this confusion, it should be hoped that a better interaction may take place between the person living with dementia and their Physiotherapist/caregiver. Aerobic exercise and integrated exercise programs involving both aerobic and muscle strengthening exercises are recommended by the world health organisation to prevent reduction in cognitive function in elderly people who are not suffering from cognitive impairment (). People with mild cognitive impairment were found to benefit from integrated aerobic and muscle strengthening exercises in terms of cognitive and muscle function ().
Physical activity is a significant moderator of age-related decline in cognition, and there are many studies that support this. Less cognitive decline was shown in older adults who participate in some sort of exercise in longitudinal studies carried out over 2 to 10 year follow-up periods. Aicheberger et al., showed that after 2.5 years, older adults aged 50 or more showed less cognitive decline if they had participated in any type of physical activity. More vigorous activity more than once a week resulted in even less cognitive decline (). Barnes et al., reported that cognitive performance could be predicted in terms of working memory, attention, processing speed and general mental function 6 years after cardiorespiratory fitness was assessed at baseline ().
With regards to cross-sectional studies, many conclude that cardiorespiratory function is associated with more efficient cognitive functions ().
This information provides us with an overview of the current best practice with regards to exercise prescription for people living with dementia. Physiotherapists should be aware of this as to help enhance their own therapeutic interactions with people living with dementia.
Exercise and its Effects on Depression
Depression has the potential to have a serious effect on therapeutic interactions for people living with dementia and their care givers. Barreto et al., found that physical activity can reduce depression levels in people living with dementia. However, the effect of this physical activity was small and it was reported that its clinical relevance was unclear. Factors that appeared to be the most positively effected in people living with dementia were aberrant motor behavior and, to a lesser extent, eating disorders, apathy and agitation. It must be noted that the last three factors did not reach statistical significance ().
Interestingly, Forbes et al., reported that exercise programs had no significant effect on depression in people living with dementia in a previous meta-analysis with a small number of studies (). However, researchers in this field such as Ballard and Corbett (), and Thuné-Boyle et al. (), conclude that exercise has a positive effect on depression. However, it is important to note that this agreed viewpoint on the benefits of exercise appears to be as a result of clinical experience rather than scientific evidence, as the results obtained from the above studies appear to be mixed ().
In a large-scale systematic review, it was concluded that there is enough evidence now to suggest that physical activity could have a significant effect on the ability of people living with dementia to perform activities of daily living (ADLs) and improve their cognitive function. This is due to the increased number of trials available to us (). Interestingly, none of the afore-mentioned trials reported and adverse effects related to exercise programs. The following statement from the same review sent a very strong message about the benefits of exercise:
‘Healthcare providers who work with people with dementia and their caregivers should feel confident in promoting exercise among this population, as decreasing the progression of cognitive decline and dependence in ADLs will have significant benefits for people with dementia and their family caregivers’ quality of life, and possibly delay the need for placement in long-term care settings’ ().
One of the concluding points this same review makes is that there are additional well designed trials that need to be carried out in a community setting. This is where most people living with dementia live and these trials need to examine outcomes that have relevance to people living with dementia and their caregivers. Some of these outcome measures might include; ADLS, depression, challenging behaviours, cognition, caregiver quality of life and mortality. Economic research also needs to be carried out in relation to the cost of residential care, acute care settings and visits to emergency departments ().
After researching the potential effects of physical activity for people living with dementia, there seems to be an obvious gap in the scientific understanding of physical activity, as well as a clear lack of evidence base for many interventions which have been used, especially with regards to the effects of exercise on promoting positive therapeutic reactions. However, the general consensus appears to be that physical activity is beneficial for people living with dementia. A wide range of benefits are reported from clinical practice and at times are backed up in the available literature. There appears to be a widespread lack of clarity with regard to how exercise interventions work, the outcomes that can be expected and indeed what outcomes are sought ().
Bowes et al., creates a robust case however that this does not mean that physical activity interventions need to await further scientific study (). There is a wide array of benefits that are indicated throughout general practice and literature including improved balance (preventing falls), grip strength (supports independence in ADLS), well-being and quality of life (). Physical activity should be appropriate to each specific individual living with dementia to ensure safety. Interestingly, there is strong practical evidence of the importance of delivering services that improved quality of life. Sociability appears to maintain people at a higher functioning for longer, this allows people to live better with dementia ().
Many current approaches place an importance on the quality of relationships between caregivers and people living with dementia as the key to the well-being of people living with dementia (). Kitwood’s concept of ‘patient-centred care’ portrays a shift towards the importance of considering each individuals own unique psychosocial needs rather than the more traditional medical approach (). Perhaps the increased importance placed on these relationships can enhance therapeutic reactions.
Use of Music
Using music as an intervention for people living with dementia has grown in popularity in the past two decades. Cowles (), and Fornazzari (), report that even as cognitive function decreases, musical memory and receptivity to music are both preserved. This could be a reason why music is thought to be suitable for people living with dementia. Juslin et al. () is one example of many studies that reports music has an association with emotion, while emotionally arousing stimuli were reported to be consistently remembered better explained by neurological mechanisms ().
As a result, music is often used in reminiscence therapy for people living with dementia (). An intervention involving music can be delivered to suit the particular needs of the participant meaning it is flexible and safe. A multitude of literature has reported on the positive effects of music on depression, anxiety, neuropsychiatric symptoms, agitation and cognitive functions in people living with dementia ().
Unfortunately, like exercise interventions which was discussed earlier, most studies have been criticized due to a poor methodological rigour thus making it impossible to come to a confident conclusion on the efficacy of music interventions (). However, taking everything into account, music would appear to have a place in clinical practice when interacting with people living with dementia. It can have a positive impact on the psychosocial needs of the person living with dementia, therefore enhancing therapeutic interactions.
Use of technology in dementia
Dementia can make various aspects of day-to-day life very challenging for people living with the condition. Technology, or Assistive Technology (AT), as it is also referred to, has long been used to assist people with dementia in overcoming these challenges and increase their quality of life by supporting their safety, independence and well-being.
The use of technology has been ‘traditionally’ associated with supporting physical problems of everyday life, but with recent technological advancements it is increasingly being used to target other problems, such as cognitive and communication impairments.
This chapter will explain various purposes of using AT; present some of the AT devices, tools and solutions that are commonly used in care for people with dementia; identify specific patient needs and explore the means of using AT in order to enhance therapeutic interactions in patient-centred healthcare settings.
Assistive Technology - a general overview
According to Bonner and Idris (), there is no clear definition of what Assistive Technology is, so a generic one can be applied in most cases:
“Any device which assists a person in retaining or improving their independence, safety, security and dignity.”
The term assistive technology refers to assistive devices (ADs) or systems that can help a person to maintain or support their independence, safety and wellbeing and manage memory problems and cognitive difficulties (,,,).
The awareness of AT devices and solutions, and codes of practice.
Bonner and Idris (2012) () claim, that the awareness of AT products, devices and solutions is fairly poor and unequal across the UK ‘relating to the quality of AT solutions available to people with dementia due to the varying approaches taken around the country.’ They add (), that despite the existing ‘industry-led standards and codes of practice, it must be noted that currently there is no formal central guidance around what constitutes ‘good’ AT, no key indicators, etc.’
The authors also identify the need to address these issues, as ‘there is the risk that solutions will be sought which only partly achieve the required aims - or not at all - and the confidence in AT solutions is undermined’, which can lead to disuse of various types of ATs, despite their ‘very real beneficial features.’ ()
Various purposes of using AT in dementia care
According to Alzheimer’s Society (, ), technology can be used in many different ways and for many purposes – it can help carry out activities and everyday tasks, increase a person’s safety, improve their confidence and quality of life; help manage risks at home, etc.; help with memory and recall; enhance their social participation, and monitor their health. It can also support independence and can help people who have problems with:
- hearing and eyesight,
- safe walking,
- finding their way around,
- memory and cognition
- daily living activities
- socialising and leisure.
Some technological aids have been designed specifically for people with dementia, but a lot of technology targeted at general public can also be helpful. AT and assistive devices (ADs) can serve various purposes (,):
- devices such as: automated prompts and reminders, clocks and calendars, medication aids and locator devices;
- technologies supporting safety (automatic lights; automated shut-off devices; water isolation devices; special plugs; fall sensors; telephone blockers, etc.);
- technologies supporting safer walking - to minimise certain risks such as the person getting lost or leaving the house at night or not appropriately dressed (alarm systems alerting a person’s move outside a set boundary; GPS and radio-frequency tracking devices or location monitoring services);
- telecare - systems or devices that remotely monitor people living in their own home and that can enable them to get support or access response services when necessary. They include community alarms, sensors and movement detectors, video conferencing; devices monitoring daily activity, such as movement sensors that oversee a person’s activity at home during day and night.
While devices listed above are useful in enhancing quality of life for people with dementia (,), their functionality lies mainly in supporting everyday tasks, enhancing safety and independence, and monitoring health; and does not target issues with communication and social interaction.
Bharucha et al. (), quoted in Klimova et al. (), observe that the literature on assistive technologies for people with dementia focuses on the devices supporting physical disabilities or on engineering and science domains rather than cognitive or functional disorders, despite the fact that these disorders are the most debilitating in dementia ().
Use of Assistive Technology to enhance therapeutic interactions
Murphy et al. () believe that the progressive, gradual deterioration of a person’s ability to remember, understand, reason and communicate is one of the most distressing aspects of the illness, both for the person with dementia and their family, friends and caregivers. This can put pressure and demands on staff in various care settings to improve their communication skills ().
As we have already established in our previous chapter ‘Communication to enhance therapeutic interaction’, communication is a vital component of therapeutic interaction (-). We have also explored the effects dementia has on the affected person, such as memory loss, reduced cognition, linguistic and sensory impairments, etc. (,). Considering the above factors, we can assume that modifying these variables by the means of certain ATs, can have an effect on communication, and thus, can potentially enhance therapeutic interactions between the patient and the therapist, which the present section will explore.
Use of technology in language and communication disorders
In context of communication/language disorders and hearing impairments, the terms AT and AD can refer to any device or tool that ‘helps a person with hearing loss or a voice, speech, or language disorder to communicate’ (), in other words, the devices that can ‘help a person to hear and understand what is being said more clearly or to express thoughts more easily’ (). ADs can be described by a variety of names, such as Assistive Listening Devices (ALDs), Augmentative and Alternative Communication (AAC) devices, as well as Alerting Devices, all of which have been described in detail on National Institute on Deafness and Other Communication Disorders’ (NIDCD) website ().
With the development of digital and wireless technologies, more and more devices are becoming available to help people with hearing, voice, speech, and language disorders communicate more meaningfully and participate more fully in their daily lives ().
Assistive Technology for cognition and Augmented Alternative Communication devices
Klimova et al. () divided ATs focusing on cognitive disorders into two types: ATs for cognition and AACs. The first type includes prospective memory aids (PMAs) and retrospective memory aids (RMAs). PMAs are sophisticated technological devices (e.g. memory glasses (DeVaul 2007 (), quoted in Klimova et al. 2016 () that are believed to aid cognitive procedures (concentration, retrieval of information, scheduling and administration of activities, etc.) and boost the performance of multiple tasks on a day to day basis and improve their sequencing, however, the evidence base for their effectiveness is limited due to lack of clinical testing (). RMAs are designed to improve a patient’s memory (e.g. Microsoft’s SenseCam – a portable digital camera that records activities in a sequential order).
The AAC devices, according to Klimova et al. (), refer to ‘any strategy, technique or tool that enhances, replaces, augments, or supplements an individual’s capabilities’, and include ‘external memory aids such as notebooks, cards or timers’, as well as speech-generating devices (SGDs) - electronic systems that can enhance or substitute speech or writing for people with severe speech impairments and enable those who are normally unable to express themselves to verbally communicate their needs, making them ‘active participants in communication interactions.’
Use of Assistive Technology in hearing impairments
People with dementia often suffer from hearing loss, which in turn can make communication even more difficult (-). A common and widely accessible ADs - hearing aids - can be of great help in improving communication and participation in activities and other situations (, ). Hearing aids amplify the strength of sounds that the affected person hears. Some hearing aids amplify all sounds (analogue types), or selected sounds (digital types). The most common type is a behind-the-ear hearing aid (, ).
As useful as they are, they also have some disadvantages – they can be uncomfortable to wear, amplify unwanted sounds if not fitted correctly and need constant maintenance (, ). A person with dementia may find it difficult to correctly use and maintain his or her hearing aid in a day to day use (, ).
Action on Hearing Loss’ () study on hearing loss in care homes reported that some residents of care homes can forget that they were diagnosed with a hearing loss. Also, some residents may not wear their hearing aid in the affected ear, and that staff would eventually forget that a particular resident wears hearing aids. Also, both residents and staff found the adjustment of hearing aids difficult and both groups reported that they were confused about the controls. Moreover, most members of staff learned about hearing aids on the job and were not aware where to find the instructions manual.
The above findings () suggest that staff could benefit from having relevant training and accessible information on how the hearing aids work so it may be worth to be aware of some basics to ensure their correct functionality ():
- A hearing aid has to be switched on in order to work, as simple as it sounds, forgetting to turn it on is a common mistake. Also, the volume needs to be set at a correct level in order to be effective.
- Hearing aids are powered by batteries which may last as a few days, hence they should be often checked and changed
- Hearing aids need frequent cleaning as they may become blocked with ear wax and dirt, etc.
Moreover, a person with dementia who is new to a hearing aid may find using it even more complex. The following hints provided by Alzheimer Scotland () can be helpful in supporting the new hearing aid user:
- It is likely to take the person some time to get used to it.
- Encourage the user to try them for short periods of time to begin with and extend them gradually.
- The person should begin using the aid in a fairly quiet environment/circumstances.
- The hearing aid can make things sound different/unfamiliar which may cause distress and some reassurance will be necessary
- Using simple written or pictorial information on how to use the aid may be helpful.
Low-tech tools and devices enhancing communication and interaction
AT has traditionally been used to help people with dementia remain safe and continue with everyday activities, but it is increasingly being used in supporting communication and social life, and to provide opportunities for activities and enjoyment, which is important in improving quality of life for people with dementia (,). Technology can help express patients’ opinions and communicate their views and preferences (,) which is essential for the development of person-centred care, the underlying element of successful ‘therapeutic communication’ (,).
Many AT devices are electronic, but the term is not exclusive to high-tech devices (, ). Even the simplest AAC devices (), using only pictures or symbols can be used to communicate desired words. Talking Mats (,,) is a widely accessible type of low-tech AAC tool (a digital, ‘high-tech’ touch screen version has recently been developed) which uses a simple system of picture symbols and a textured mat that allow people to point out their feelings about various choices within a topic by placing relevant images below a visual scale. It was found that conversations using Talking Mats were more effective for people with dementia than both unstructured (ordinary) or structured conversations. Improvements were clearly visible in the participants’ understanding, engagement, and ability to keep on track and make their views understood.
In their study (,), Murphy et al. interviewed 31 people at various stages of dementia about their well-being in order to compare the effectiveness of communication between usual communication methods and Talking Mats (,). The study found that:
- Talking Mats enhanced the reliability of information provided by people with dementia and extended conversation time.
- The amount of time spent ‘on-task’ – e.g. making eye contact and engaging actively in conversation – increased when using Talking Mats, and subjects were less distracted.
- Talking Mats reduced instances of repetitive behaviour, such as repeating words, phrases, ideas or actions.
Murphy et al. (,) concluded that Talking Mats can be used at all stages of dementia and that it is an effective tool that improves communication and the quality of care by helping people with dementia to engage with family and caregivers and to communicate their needs and preferences.
High-tech tools and devices enhancing communication and interaction
The nature of assistive technologies is changing (-). The interest in the implementation of high-tech ATs, e.g. touchscreen technology, to improve quality of life for older people, particularly those living with dementia, is growing (,). In contrast to a common belief that age is a negative factor in using technology, research shows that older generations of people are more digitally aware than 10 years ago ().
Technologies and apps for smartphones and tablets are now more accessible thanks to the widespread access to the Internet, and devices and apps that have been developed for the general public are progressively being used by people with dementia (,).
There are also apps that are developed primarily for people with dementia (, ) and a guide is being developed by the University of Sheffield’s Centre for Assistive Technology and Connected Healthcare (CATCH) that aims at identifying apps suitable for people living with dementia ().
Touchscreen devices are both interactive and easy to use which can help incorporate ‘restorative memory’ and creative therapy interventions (,). Along with the touch screen version of Talking Mats mentioned in the previous section (,,), one of the most popular apps used in dementia is MindMate (,) – a self-management app designed to provide an assistance platform for people with dementia, carers and family members. The aim of the app is to engage the patient and help keep their mind active, facilitating the retention of their memories and, by connecting the family, it enables the sharing of information with the carer. It is used by over 45,000 people at home and in various care settings ().
It is believed that technology can help people with dementia express themselves and enhance interaction with others (131), and touchscreen devices such as Apple’s iPad (and other manufacturers’ products, also called tablets), have proved popular and have an enormous range of ‘apps’ ().
Despite the beliefs and positive observations (,), the University of Worcester’s Association for Dementia Studies (2015) (,) identifies that there is a lack of ‘systematic approaches to introducing and using touchscreen technology in care settings, as well as a lack of evidence based analysis of the benefits’ (,), and more research is still needed.
The biggest study to date, conducted by the University of Worcester in collaboration with Anchor (,), England’s largest housing and care provider for older people, found that iPads have significant potential to enhance the quality of life of older people in care settings, especially patients with dementia. The study evaluated apps used to reassure, calm, interest and engage residents.
Researchers identified a range of positive outcomes for residents with dementia including increased interaction, greater inclusion and improved communication with relatives. The iPads ‘allowed greater interaction between residents with 56% of staff able to involve ten or more residents in activities at one time. Interaction with relatives was also cited as a key benefit with 46% of staff involving family members through the use of iPads. (,)
- Supporting reminiscence: recording people’s life histories using apps such as Life Journal triggered positive emotions;
- Aiding recall: the technology was highly valued as an aid to help with ADLs;
- Increasing interpersonal reactions: the use of iPad ‘increased communication with other residents, staff members and family. iPad use enhanced interactions both directly – through activities involving the iPad – and indirectly – by talking about the iPad.’;
- Intergenerational communication: sharing the experience of using the technology acted as a link between younger and older generations;
- Staff-resident relationships: working with the technology helped to get to know the residents better and increased rapport;
- Improving quality of life: via increased interactions and learning opportunity provided by the technology;
- Ease of use: the iPad was perceived to be easier to use than an ordinary.
- Access to WiFi networks is easily provided;
- The staff should be trained and should have the confidence and skills to support their patients;
- The users get one-to-one scaffolded support when needed; and
- The ergonomics of the device, etc., are addressed.
It seems that the touch screen technologies can enhance therapeutic interaction for people with dementia by positively affecting factors such as memory retention, reminiscence, direct and indirect interaction with peers, family and staff; communication and ways of expressing themselves which helps the therapists better understand their needs.
The researchers (,) recommend that touchscreen technology such as iPad should be successfully implemented on a wider scale in care settings, as it has been found to enhance reminiscence and recall, improve staff-resident rapport and increase interpersonal reactions, etc.
They also recommend (,) that further prospective evaluation is needed ‘in order to establish the evidence base, particularly in regard to a rehabilitative role for touchscreen technology in the care of older adults with dementia in residential and nursing care home settings.’
The future of AT in dementia
As we have already mentioned in the previous sections, more research and evidence base is required to fully evaluate the positive impact of AT on people with dementia (,). Evans et al. (2015) () suggest that future development of ATs needs to implement user centred design and user testing. AT designers should use the available literature ‘in order to inform the design of AT for people with dementia. Using interviews with individuals with dementia but also with their caregivers, enables designers to discover what the individuals with Dementia really want and need, as well as what their care givers want and would benefit from so as to increase acceptance. It is not sufficient to simply understand the theoretical causes and implications of cognitive impairment, technologists need to understand what the user and their caregiver really wants from technology’ ().
Dementia gradually affects cognition and communication, which in turn can have a negative effect on therapeutic interactions. ATs are increasingly being used to help people with dementia overcome every-day problems in communication and cognition, and AT devices such as hearing aids and ‘low-tech’ AAC and/or ‘high-tech’ touch screen devices have been found to help memory retention, reminiscence, direct and indirect interaction with peers, family and staff; communication and ways of expressing themselves, etc., all of which can have positive effects on therapeutic interactions. Although some positive findings that recommend the implementation of ATs on a wider scale in care settings have emerged in recent years, research in this field is still limited and further research is recommended to establish good evidence base.
In conclusion, as the ageing population progressively increases, physiotherapists will be faced with increasing numbers of those living with dementia. As health care professionals, we must engage and promote therapeutic interactions with this population in order to provide optimal patient outcomes. Due to the deteriorations in communication and cognition that can occur with this population, it is important to utilise techniques such as: managing ones attitudes and beliefs, promoting the optimal patient environment, various exercise interventions and assistive technological devices to ensure optimal emotional comfort and patient personal control. Through ensuring psychological and physical well being of a patient, behaviour that can be deemed “problematic” can potentially become better controlled and patient QOL can be enhanced.
If you wish to further develop your knowledge of therapeutic interaction with persons living with dementia, check out these links, documentaries, etc.
- Louis Therouxs’ documentary Extreme Love: Dementia () provides excellent examples of how carers implement therapeutic interaction and the use of re-directing those living with dementia. Available on Netflix under Louis Theroux Collection: Episode 21
- Alzheimer’s Society website () includes information on: the symptoms and diagnosis of dementia, living with dementia, being a carer for a person living with dementia, as well as help and support. This information is provided through video, pamphlets as well as an online reading resource. Available: https://www.alzheimers.org.uk/
- Documentary Alive Inside: A Story of Music & Memory () shows how using a tool such as personally meaningful music can help an individual (specifically those living with dementia) reconnect with their own identity and prevent or reverse the effects of becoming withdrawn. Available on Netflix
- National Institute on Ageing’s website () provides Alzheimer’s and dementia resources for those involved in the health and social care of those living with dementia: https://www.nia.nih.gov/alzheimers/alzheimers-and-dementia-resources-professionals
- Course available to take called Validating Me: skills for therapeutic interaction, which aims to “develop qualities necessary for a therapeutic relationship with people experiencing dementia, using person-centred validation skills, and enabling them to have conversations that matter” (). The therapeutic skills learned on this course, are also demonstrated alternatively in the film Conversations that matter - breaking through dementia (), which can also be used as a training resource
- Journal article: Health promotion in palliative care: the patients’ perception of therapeutic interaction with the palliative nurse in the primary care setting (4) which defines therapeutic interaction and assists in identifying the patients perspective of effective holistic care
- Motion picture Still Alice () is based on the real life events of a woman who develops early-onset Alzheimer’s and has to drastically alter her lifestyle in order to manage the progression of her disease. As her memory significantly deteriorates she uses memory aids and tools to maintain cognitive function. Her husband becomes her carer and uses whatever modalities are available to him to enhance the therapeutic interactions he has with his wife in order to promote a life of normalcy.
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