Caring for people with dementia: An art‐based approach Shama Chaudhary 4th year Medical Student The University of Manchester
Word Count: 3,839
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Abstract Dementia poses a huge and ever increasing disease burden to societies worldwide. (1) It has been described as an epidemic and the problem is only likely to escalate with an ageing global population. This reports aims to explore ways to optimise dementia care and focuses on personcentred methods including art based interventions. There is increasing evidence base for use of psychosocial interventions in management of dementia. (2) It will also look at the current art-based intervention in practice in South Australia and their impact. Dementia, a history The word Dementia is derived from Latin de (out of), mens (mind) and ia (state). The word dementia has historically been used to describe a mental derangement of several types regardless of the age of the patient. The first association between dementia and ageing on record was made by Aretaeusn of Cappadocia in second century. He attributed dementia to normal mechanisms of ageing. The distinction between normal ageing of the brain and late life neuro-pathologies was not quite established until a breakthrough in understanding dementia came with English physician Dr James Pichard proposing in 1837 that dementia was not part of the normal ageing. Our understanding of dementia has come a long way since but there are still many unanswered questions. (3) Current understanding and classification of dementia
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Dementia can be defined as “an acquired global impairment of intellect, reason and personality without impairment of consciousness.”(4) Memory dysfunction and emotional lability are usually prominent features. Dementia is an umbrella term encompassing many heterogeneous syndromes. There is an absence of consensus on a unifying mechanism for these conditions.(5) A generally acceptable way of classifying dementia is based on whether it is neurodegenerative or not. Most common causes of dementia are neurodegenerative and include Alzheimer’s disease, dementia with Lewy bodies, frontotemporal dementias,
Parkinson’s
disease
dementia
and
Huntington’s
disease.
Non
neurodegenerative causes of dementia are given in the table below Causes
Examples
Cerebrovascular
multi-infarct
dementia,
Binswanger's
disease Drugs and toxins
barbiturates,
anticholinergic
agents,
digoxin, alcohol, heavy metals Infections
Creutzfeldt-Jakob disease, HIV infection, neurosyphilis
Metabolic disorders
uraemia, hepatic failure, hypothyroidism, hypoparathyroidism
Vitamin Deficiencies
B1-Wernicke-Korsakoff syndrome, B2, B12
Intracranial space-occupying lesions
neoplasms, chronic subdural haematoma
Paraneoplastic syndromes
limbic encephalitis
Hydrocephalous
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Alzheimer’s disease is the by far the most common cause of dementia in the developed world followed by dementia with Lewy bodies, Vascular dementias and frontotemporal dementias. Dementia and society Dementia has always been a significant social issue due to its behavioural and cognitive manifestations. Mental disorders were recognised as illness in the western world in fifteenth and sixteenth centuries. Before that people with dementia either lived in alms houses or on streets when their families could no longer care for them. From eighteenth century onwards, they were cared for by psychiatric hospitals. The proportion of people with dementia in these establishments has continued to increase ever since due to an ageing population as well as due to improved diagnostic tools and general awareness. However, a significant proportion of people with dementia are still looked after by their families. Impact of dementia Dementia has enormous impact on the person and people around them. Increasing level of care is required which, when combined with the emotional aspect of the disease can be devastating for loved ones and can lead to impaired state of wellbeing not just for the patients but for their carers too. The factors important in determining the impact of dementia include severity of disease, rate of progression, the nature of relationship in pre morbid person with dementia and their carers as well as availability of social, medical and financial support. Dementia impacts every aspect of a person's life. It deprives them of their autonomy so that they can't live independently or make judgements. Activities and hobbies that
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they used to enjoy may not be possible due to a decline in memory and cognition. The impact of dementia may cause further psychiatric problems such as depression and psychosis. In later stages of the disease the motor system is often affected and speech may be impaired or essentially ineffective rendering them unable to communicate their wishes. All of the above have a significant bearing on the quality of life of the person with dementia. Quality of life (henceforth referred to as QoL) is defined by WHO in terms of physical and psychological wellbeing, level of independence, social relationships, environments and spirituality, religion and personal beliefs. Health related QoL (HRQoL) aims to measure the impact of a disease on a person's QoL. HRQoL is at least partly subjective and can be challenging to measure in people with dementia due to several factors including impaired memory of experiences, language problems and lack of insight. For those reasons, QoL for people with dementia is mainly measured by objective measures such as degree of impairment, social interactions and quality of their surrounding environment and care. Quality of care that people receive due to their dementia is very important determinant of QoL due to obvious reasons; however, it has been shown that some people with dementia were likely to be treated differently from general population even for issues unrelated to dementia. Nygaard and Jarland (2005) found that people with dementia in a care home were less likely to be given pain relief than people who did not suffer from dementia. Another retrospective, post mortem study in a hospital found that fewer medical interventions were attempted in people who had dementia compared to those who did not have dementia. Other issues associated with quality of care for dementia include the potential for abuse, neglect and other harmful behaviours due to vulnerability of the person with dementia.
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The other important impact to consider is the impact on the caregiver. Due to the nature of dementia and typical absence of insight on the patient's part, much of the burden of the disease in dementia is shouldered by their carers. (6) Family carers are usually spouses or adult children with no previous experience or training. Caring for people with dementia requires very high investment of time, money and emotions and often prevents carers from pursuing their own ambitions and hobbies in life. This combined with ever increasing demands of care can be very emotionally and physically draining. Carers have been found to score much below the normal average on HRQoL scores. (7) There is also evidence of higher than normal morbidity and mortality in caregivers. (8) Use of art based interventions in management of dementia The use of art based interventions to improve quality of life and function in people with dementia is a field of growing interest. There is evidence to support that frequent participation in creative activities can abate cognitive decline(9) and reduce the risk of developing dementia.(10) Traditionally, modes of these interventions have included drawing, painting, singing, poetry and music and there are demonstrable benefits of using all of those(11)(12). There are also some programmes being developed aiming to deliver the above interventions through new technology e.g. Tablets(13), however, the efficacy of these remains to be seen. The rationale for using these mainly sensory interventions is that the sensory memory is preserved in dementia till late stages. George Sperling’s work on sensory
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memory (14) demonstrated that it is a fast-decaying type of memory that is independent of short term and long term memory types, however, it is strongly associated with recall. For example a certain sight or smell can bring long-term memories flooding back. These characteristics make it ideal for exploitation in dealing with dementia memory loss. Not only does the patient get to enjoy a part of their memory function that is preserved but it also helps improve the functions that are compromised. The long term memory type is usually most affected in dementia. A widely used classification of long term memory is that by Anderson (15) who divided it into declarative and procedural type. The declarative or explicit memory requires conscious recall of information and includes semantic memory i-e facts without context and episodic memory i-e facts within time-and-place context. The procedural or implicit memory on the other hand concerns information that does not require conscious recall and includes skills such as riding a bike. Fortunately, this type of memory is also preserved in dementia. This means that people with dementia are able to enjoy activities such gardening, knitting and reading a book till late stages of the disease. My time at Alzheimer’s Australia in Adelaide Recently, I had the chance to spend time with an organisation called Alzheimer’s Australia at their South Australia branch in Adelaide. My main interest was to learn about their art-based interventions in management of dementia. During the course of this placement, I had the opportunity to learn about and observe a technique called
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Montessori Method being used in order to improve quality of life and health outcomes in patients with dementia. Background of Montessori Technique Dr Maria Montessori (1870-1952) was one of the first female physicians in Italy. Her special interests were paediatrics and rehabilitation. During her internship in a psychiatric clinic in Rome, she was assigned a group of children considered mentally deficient and “unteachable”. She recognised that these children responded favourably when they found an activity interesting in a supportive rather than corrective environment. She devised a very successful methodology to teach these children now known as the Montessori Method. It includes an education tailored to an individual’s level of functioning and pace, an active role for everyone in the classroom, “fail-safe” activities which contribute to the child’s sense of self-worth and a variety in the ways of learning. Montessori philosophy and mission was to enable individuals to be as independent as possible, to have a meaningful place in their community, to possess high self-esteem and finally to have a chance to make meaningful contributions to their community Dr Cameron Camp (Director of research and development at Centre for Applied Research in Dementia) recognised the potential for Montessori technique to be adapted for dementia and has done extensive research in this field. Along with devising many other activities, he also conceived specially adapted books for people with dementia to bank on the fact that most of them still have their procedural memory intact and can read and enjoy a good book.
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These books have larger font with writing on one side of the page. They also ensure that the sentences don’t run over to the next page. All this helps to combat the confusion and minimises distraction to make reading more enjoyable. They are also designed to be read in groups to add the social incentive to reading a book. An example of such book is given below.
Montessori as adapted to Dementia care In terms of dementia, Montessori technique focuses on the human need for sensory and cognitive stimulation. Activities are designed to be engaging, provide stimulation for the senses and promote a sense of independence and achievement in the individual. The level of difficulty is adapted to individual’s capabilities. There is an
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emphasis on "doing" as it helps the individual exercise control over their environment. These activities have shown to decrease agitation and increase engagement in people with dementia.(16,17) A Montessori based care would start with an individual’s needs assessment. This is done on a basic level with Maslow’s hierarchy of needs i-e physical needs (I-e pain, hunger, physical, discomfort) must be dealt with before higher needs (the need for intellectual stimulation, love, and self-esteem) are tended to. The next step is assessing what the individual’s physical and mental capabilities are. This includes taking into account any comorbidities such as arthritis as well as the level of their cognitive decline. With the above limitations in mind, the activities are tailored to individual’s past profession and interests. For example, for someone who was a tailor, a fabric based activity might be suitable. There are 4 types of activities used in Montessori Method: activities of daily living, sensory, cognitive, and roles and routines. An activity may incorporate one or more of these components. The aim is to encourage maximum mental and physical mobility. In addition to activities, environment plays a key role in maximising the physical and social wellbeing of a person with dementia. It is important that the environment provides intrigue and there are things to do at hand e.g. having reminiscing photo books on tables. It is equally important that environment is familiar to them. This might be achieved in residential care by personalising their rooms with their belonging e.g. pictures, paintings and pieces of furniture from their home. Having the room set up the same way they had at home might also be helpful. It is always recommended to have lots of reassuring environmental cues to combat some of the
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confusion and fear that dementia brings along. It might also help to have the answers to their most frequent questions printed and displayed within their line of vision. The people in regular contact with a person with dementia e.g. family and carers need to be mindful that verbal communication might not be possible in some cases but that need not limit their social interaction with them. There are ways to engage with them other than verbal communication e.g. offering to make their hair for them or doing an activity together. Montessori activities should always be explained by demonstration rather than verbal directions. “Validation” can be used to interact with people with dementia to build a rapport and open a channel of communication. It involves validating their concerns and fears. For example if a person with dementia tells carer “I am waiting for my husband to come home before I have dinner.” It might be useful to ask them a question about their husband rather than reminding them that their husband had passed away a long time ago. Application of Montessori Technique in residential care settings: I had an opportunity to spend a day at two residential care units in North Eastern Community Hospital in Adelaide where Montessori based activities are used for residents by “life-style and leisure co-ordinators”. The residents are invited to part-take in these activities from 10.30 till noon and 1.30 till 4pm every day. Activities include flower arranging, folding clothes, finding shells in sand and matching and sorting objects based on colour and shapes.
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A sorting activity based on shapes. It aims to focus on hand-eye co-ordination, as well
as
movement
repetitive to
preserve
function.
It was great to see people engaged in these activities. It was easy to see that they were enjoying them. I found a lady, Brenda (not her real name) looking for sea shells in the sand. “I loved going to the beach when I was little” she told me “My sister and I would gather lots of seashells and play with them.” After having found all the shells, she went on arrange them into a pattern.
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On another table, a gentleman was busy slotting blocks in relevant shapes. The task was made difficult due to severe arthritis in his hands. However, he was very focused and determinedly continued with the painstaking fine movements while his lunch waited near him.
Other people around the room chose from activities such as reading, reminiscing photo books, flower arranging and handling babushkas dolls. One of the ladies occupied herself with ironing and putting clothes on a line.
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I left the hospital with an impression that these activities provide the residents with much needed stimulation and sense of accomplishment as well as keeping them
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physically and mentally active. It allows them to enjoy the present moment while doing something meaningful with their time. Apart from the obvious holistic benefit, there is some evidence (16) that these interventions result in reduction in “responsive behaviours” in people with dementia. Behaviours such as wandering, general restlessness, agitation, grabbing on people, pacing, repetitive questioning and requests for help, trying to get to a different place (exit seeking) and verbal issues ( e.g. screaming and swearing) are referred to as responsive behaviours as they are thought to be caused by unmet needs coupled with memory loss. Montessori postulated that “boredom and restlessness are integrally related to problem behaviours” Case Study I met up with Thelma, an 87 year old lady with dementia at her house. She lives with her daughter Cheryl and son-in-law and has lived with them for past three decades. Thelma was diagnosed with dementia in 2009 which has been confirmed to be the Lewy body type recently. Cheryl, who is a carer for her mother tried daily Montessori activities with her a year ago and they were both very happy with the outcome. Talking about her experience, Thelma recalls “Montessori activities pulled out of a black hole I was in.” Cheryl feels that they have been a great use to her as a carer too “I can gauge how mum is doing based on these activities on a daily basis” Thelma had a baseline score of 16 on the Mini Mental State Exam (MMSE), however, after 6 months of daily Montessori activities, her score went up to 24. MMSE is a diagnostic scale used to help with the diagnoses of Dementia and is scored out of 30. A score of below 23 is usually closely co-related to dementia.
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Thelma and Cheryl still do these activities on a regular basis and were kind enough to let me observe one of these sessions.
1 Vegetable Bingo
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Matching
pictures
to
words
2 Reading together Other art based interventions: It can be argued that human beings are inherently creative. Regardless of any background in art, we are all intrigued by colours, shapes and interfaces as well as sounds. The processes of both learning and creation are associated with a sense of reward, self-accomplishment and purpose in life. All this makes art based interventions very favourable for people with dementia. “Alzheimer’s Australia” run a programme called “give it a go” for people with dementia and their carers. It provides them with a platform to meet up and participate in various activities such as painting, poetry, tai chi, and dance etc.
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One of the other interventions used is “Child representational therapy” It is defined as “A validation/reminiscence and diversional intervention that provides people with dementia an opportunity to interact with a ‘life-like’ baby doll in a manner that is therapeutic to them. “ A
life-like
baby
doll
The therapeutic value comes from the emotional expression to or about the baby doll, a sense of purpose and comfort in looking after and holding the “baby” (Some may perceive it as a real baby, others may not) and reminiscence about personal child rearing experience. The child representational therapy may be of use to people with who have social withdrawal or “responsive” behaviour. It may work better with people who liked being around children or had children themselves. It is also shown to have better therapeutic value whereas the person with dementia perceives the doll to be a real baby. In such cases, it is crucial for carers to mirror their behaviour and treat the baby as they would a real baby.
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It is very important to inform family and significant others about the therapy in detail and gain their consent as some people may find it patronising and condescending for dolls to be used for adults.
Conclusion It has become clear in recent years that for optimum outcomes for a patient with dementia, the care system would have to be focused on preserving a person’s identity and “person-hood” (18) Montessori and other art-based interventions tend to focus on the person within the patient and provide people with a meaningful way of spending their time, doing something they enjoy while at the same time preserving social, cognitive and physical function. There are lessons to be learned from this successful use of art for positive medical outcomes and there is room for exploration of application of these techniques in other areas of medicine too. Thanks to international collaboration, some of the Montessori methods used by Alzheimer Australia are now being adapted by Manchester Art Gallery and Manchester Museum.
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Ozdemir L, Akdemir N. Effects of multisensory stimulation on cognition, depression and anxiety levels of mildly-affected Alzheimer’s patients. J. Neurol. Sci. 2009 Aug 15;283(1-2):211–3.
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Kitwood T, Bredin K. Towards a Theory of Dementia Care: Personhood and Well-being. Ageing Soc. 1992;12(03):269–87.