Pain in Dementia and the need to update nursing curriculum in Egypt

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    dementia is affecting most cognitive abilities and consequently make patients dependent on others within all activities of daily living. When pain exists with dementia, the patient's diminished abilities to express or communicate make it difficult to detect the presence of pain. This article highlight the urgent need for egyptian nursing curriculum and health care assistance training to accommodate pain assessment and management during dementia and provide more training about this.

    Pain in Dementia and the need to update nursing curriculum in Egypt

    Dementia is not a specific disease but it is a general term for describing a decline in cognitive abilities (Alzheimer Association 2017). Dementia depicts a group of symptoms affecting memory, thinking and social abilities severely enough to interrupts daily functioning (Mayo Clinic 2016). According to the Alzheimer's disease international (ADI), the estimated number of people living with dementia is 46.8 million people worldwide and this number will be doubled every 20 years, reaching 74.7 million in 2030 (ADI 2016).

    Persons suffering from dementia usually suffer from under-recognition and limited capacity to express pain and discomfort and consequently this affects their quality of life (WHO 2016, NHS 2013). Due to the deteriorating communication abilities within dementia patients, sometimes pain is reflected by different verbal and nonverbal expressions. Frequently, the lacking expression of pain could lead to physiological and psychological distress among patients resulting in what is described by dementia care providers as challenging behaviour (McAuliffe et al 2012). Literature highlighted pain as a main reason behind patients' struggle and discomfort (Shega et al 2007, Horgas and Miller 2008). Pain can be caused by chronic conditions such as arthritis and vascular diseases among elderly or other conditions such as pressure ulcer, falls, cancer and post surgical (McAuliffe et al 2012).

    Signs of pain among dementia patients include distressed facial expressions, agitation, restlessness, anger, discomfort, confusion, crying, limited activities and disturbed sleep (Achterberg et al 2013, Alzhiemr's Australia 2011, Horgas and Miller 2008). However, Horgas and Miller 2008 argued that signs of suspected pain in dementia patients such as vocalization, breathing, and body language could be referred to factors other than pain such as anxiety or cold. They asserted the need to reevaluate the patient several times along different days if one of these symptoms existed.

    The WHO 2016 alerted that human rights of dementia patients are violated repeatedly due to the frequent use of chemical and physical restraints even when legislation to protect the patients are in place. As a nurse, I recognized from different situations in practice that pain in dementia is not properly assessed or managed appropriately in many occasions. Although I was graduated as a bachelor degree nurse and studied nursing for five years in Egypt, I did not have enough information about pain assessment scales for dementia patients and how to maintain comfort for those patients. Even, I used to assume wrongly that it is normal, sometimes, to find dementia patients agitated, angry, restless, crying and even restrained specially in places as intensive care units. However, experiencing many situations with patients obliged me to search for more information to understand communication challenges with dementia and what might lead to such anger or restless feelings among patients. I felt responsible to develop my knowledge and practice to achieve patient-centred care approach and respond to individualised needs for each patient.

    One of these situations occurred in an elderly care home where one of the residents who suffered from dementia started to avoid eating or drinking and even cry when food is served. The resident lost her communication abilities for several months and needed help in most activities of daily living because of dementia. Changing food type, time and quality did not help or improve the situation. The care plan for the patient started to include intravenous fluids and a decision was mad by medical team to start nasogastric feeding for the patient. The patient was given antipsychotic medications because of the increased agitation, distress and restlessness. Finally, during the weekly medical check for residents, the general practitioner discovered an abscess in the patient teeth and that she was suffering from sever pain. This was one of many situations where pain was at the heart of the scene with dementia but we can hardly recognise it or highlight its effect on patients.

    Situations from clinical practice influenced my career as a member in the curriculum development committee for health care assistants (HCA) programmes in Egypt. I assumed including dementia and pain assessment should be part of the HCA curriculum to achieve patient-centred care strategies and provide dignified care approach. I also believe that nursing education and HCA training programmes that are taking place in Egypt could be more patient centred if decision makers and curriculum development specialists have a shared vision on the health care needs and worked to review and update the curriculum based on the upcoming need to service users and feedback from graduates based on their clinical experience.

    Alzhimer's Disaese International (ADI). 2016. The global voice on demebtia: dementia statistics.
    [online] vaialble from: Dementia statistics | Alzheimer's Disease International

    Alzhiemr's Australia. 2011. Pain and dementia. [online] available at:

    Alzheimer association. 2017. What is dementia. [Online] available from:
    Dementia - Signs, Symptoms, Causes, Tests, Treatment, Care |

    Achterberg, W., Pieper, M., Dalen-Kok, A., De Waal, M., Husebo, B., Lautenbacher, S., Kunz, M., Scherser, E., and Corbette, A. 2013. Pain management in patients with dementia. Clinical Interventions in Ageing, vol.8, no.1, pp: 1471-1482.

    Horgas, A. and Miller, L. 2008. Pain assessment in people with dementia. Advanced Journal of Nursing, Vol. 108, no.7

    NHS. 2013. Managing pain in patients with dementia. Hertfordshire: clinical Commissioning Group.[online] available from:

    Mayo Clinic. 2016. Dementia overview. [online] avaible from: Dementia - Overview - Mayo Clinic

    McAuliffe, L. , Brown, D., Fetherstonhaugh, D. 2012. Pain and dementia: an overview of literature. International journal of older people nursing, vol.7, pp:219-226

    WHO. 2013. Dementia factsheet. [Online] available from:
    WHO | Dementia
    Last edit by Joe V on Jun 15, '18
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    About Amira El Baqary, DNP, PhD

    Nursing Lecturer in Egypt specialised in Geriatric and Mental health Nursing Professional Doctorate of health & Social Sciences, Queen Margaret University

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  3. by   strawberryluv
    Thanks for this article. I feel it has opened up the discussion on this issue that is pushed back from our minds. I work with the elderly and I didn't really think of any agitation and restlessness on their part as attributed to pain. I will try to be more mindful now.