22. People with particular conditions
This chapter considers the communication needs of people presenting with particular conditions: decreased cognitive function, life-limiting illness, mental illness, hearing impairment and visual impairment.
SMALL GROUP ACTIVITY: PARTICULAR CONDITIONS
Decreased cognitive function
Life-limiting illness
Mental illness
Hearing impairment
Visual impairment
• Define these particular conditions.
• List some of the specific behaviours (and emotions if relevant) that might be typical of a person with these conditions.
• Choose one of three options:
– List the emotions a person experiencing a life-limiting illness might experience when relating to a health service, or
– Consider which level of cognitive loss (mild, moderate or severe) may cause the most difficulty for an individual relating to a health professional, or
– Consider which individuals may be most susceptible to experiencing a mental illness, hearing impairment or visual impairment.
• List possible reasons that might explain the emotions a person with these conditions might experience when seeing a health professional.
• List principles for effective communication to remember when communicating with a person with these conditions. Give reasons for the need to remember these principles.
• Check your answers against the information below, noting any additional thoughts or ideas.
A person who has decreased cognitive function
(Key words: dementia, Alzheimer’s disease, intellectual disability (mental retardation), addictive behaviours)
It is important to note that children with decreased cognitive function due to Down Syndrome or an intellectual disability do not fall into the same category as someone who has lost cognitive function because of ageing, head injury or addictive behaviours. Such children have specific needs but are able to learn and are very able in many areas. Alternatively, in most cases people experiencing a loss of cognitive function find it difficult to compensate for that loss after a particular level of deterioration.
Definition of decreased cognitive function
A person with decreased cognitive function may be experiencing a mild, moderate or severe decrease in cognitive function.
A person with a mild decrease in cognitive function is someone who may
• Function independently
• Choose to participate in the activities they perform well and enjoy
• Perform their self-care activities
• Assist others in basic tasks they enjoy performing
• Understand and express themself to facilitate understanding
• Develop and use compensatory strategies to participate and function
• Learn and thus remember with repetition and perseverance
• ‘Work’ in a structured environment with some support
• Enjoy social interaction.
A person with a moderate decrease in cognitive function is someone who may
• Function with some assistance
• Know what they enjoy performing but may have difficulty making choices
• Perform some self-care activities independently (e.g. dressing and toileting; may require a reminder to bathe)
• Not always use words to communicate, but may understand others
• Learn simple tasks with repetition and visual cues
• Be able to ‘work’ in a supported workplace with repetitive activities
• Enjoy social interaction with particular familiar people.
A person with a severe decrease in cognitive function is someone who may
• Require assistance with all personal care needs and with all other activities, except activities relating to mobility
• Require constant supervision if they tend to wander and become lost
• Be incoherent and unable to consistently communicate; however, may respond randomly to particular people, pictures or objects
• Recognise familiar people they see constantly, but not consistently recognise others
• Be repetitive in the sounds they make and in their behaviours
• Be violent
• Be sweet and passive.
Behaviours related to being a person with decreased cognitive function
The behaviours of a person with decreased cognitive function will vary according to the severity of the decrease in function. A person with decreased cognitive function might
• Be illogical, irrational and unpredictable
• Be perfectly happy sometimes
• Repeat particular behaviours
• Ask the same irrelevant questions repeatedly
• Become easily distressed without provocation
• Wander for no reason
• Be violent – although not all individuals with a decrease in cognitive function will be violent
• Behave in socially unacceptable ways.
Individuals with decreased cognitive function most susceptible to experiencing difficulty when relating to a health professional
A person with a moderate decrease in cognitive function is most likely to experience difficulty when relating to a health professional. In groups discuss and explain why.
Possible emotions a person with decreased cognitive function might experience
A person with decreased cognitive function might experience emotions related to
• A change in routine, which can cause confusion and fear
• Unfamiliar environments and/or people, which may cause disturbed behaviour
• A lack of connection with reality.
Principles for effective communication with a person with decreased cognitive function
When communicating with a person with decreased cognitive function it is important to
• Demonstrate respect
• Demonstrate empathy and understanding
• Be consistent
• Have a sense of humour
• Give clear instructions with visual cues if necessary
• Practise holistic communication.
Strategies for communicating with a person with decreased cognitive function
• Invest time to develop a therapeutic relationship.
• Do not take anything personally that the person might say to you or about you.
• Consider the whole person.
• Communicate gently and consistently.
• Avoid expressions of anger and frustration.
• Aim to maintain a feeling of safety, happiness and comfort for the person wherever possible.
• Remember they are generally unable to change the way they relate, how they behave and what they say.
ROLE PLAYS
Role-play the following scenarios. Before acting the roles you may wish to decide what type of assistance Person 1 requires. If it is not possible to role-play these scenarios, consider and explore the possible responses and communication strategies that will achieve effective communication and family/person-centred practice.
Scenario one: The male and the health professional
Person 1: Your name is Fred. You are 75 years old and you live alone in a large house. A bus collects you weekly to attend a group. You do not know where your wife has gone and what happened to the custard tarts you were going to eat with your cup of tea.
Person 2: You are the health professional who has Fred in a weekly group. Fred is a friendly man, however, he repeatedly asks you what happened to his wife who died 10 years ago and if you have eaten his custard tarts. Because Fred lives alone, you are very concerned about his safety and his ability to care for himself. You know his daughter visits daily, cleans his house and provides him with a hot meal. However, you are still concerned about his safety. Have a conversation with Fred and decide if he may be safer in the familiarity of his own home than elsewhere.
Scenario two: The female and the health professional
Person 1: Your name is Sarah. Your mother, Irene, is 82 years old and is currently in a rehabilitation unit because she recently had a right cerebrovascular accident (CVA). Prior to the stroke your mother and father, Harry, lived together in their house for 35 years. While your father is frail, he is mentally able and has been successfully caring for your mother with your support. You realise your mother has decreased cognitive function that was present before the stroke and has been worsened by the stroke, and that it might be suitable for her to be placed somewhere for people with her stage of dementia. However, you are worried about how your father will cope emotionally if they are separated.
Person 2: You are Irene and you have little control over your behaviour. You often wander and disappear to be found undressing and trying to get into bed with any man you can find on a bed. Some of the male people seeking assistance think it is amusing, while others find it disturbing.
Person 3: You are Harry. As Irene’s husband of 53 years you really want to continue caring for her. You do find her exhausting and are aware that you are not as strong as you have been. You feel you can continue caring for her with the support and assistance of your daughter.
Person 4: You are the health professional who needs to speak with the family including Irene to determine whether she will return home or go to a high-dependency ward of a nursing home.
GROUP DISCUSSION
As a large group discuss the observations, emotions and outcomes of the role plays. Suggest possible alternative strategies that may increase the effectiveness of the communication in a similar situation.
A person who experiences a life-limiting illness and their family
(Key words: life-limiting illness, critical care, terminal illness, death, grief, loss, palliative care)
Facts about people who know they are dying and their families
A person who knows they are dying and the members of their family or circle of friends will experience emotions according to the ‘cycle of grief’. Kubler-Ross (1969, 2005) suggested stages of grief; however, it is now recognised that people who know they are dying can experience the emotions typical of a ‘stage’ at various times throughout the process of the disease. They do not experience them in order, nor do they move through the emotions as though they are stages. They may experience them repeatedly before they reach acceptance. The emotions include denial, rage, resentment, envy, bargaining, depression and acceptance.
It is important to note that an individual experiencing loss of any kind may experience these emotions while attempting to grieve and adjust to the loss. Family members or friends of a person who is dying usually experience the cycle of grief and the related emotions.
People who have a life-limiting illness often receive services from palliative care units. These units generally follow national policies, standards and guidelines specifically developed for palliative care situations (see Palliative Care Australia [www.pallcare.org.au] or New Zealand Palliative Care Strategy [www.moh.govt.nz/moh.nsf/pagesmh/2951]).
The World Health Organization (WHO 2008) states that palliative care is an approach that improves the quality of life of people and their families facing the problems associated with life-threatening illness. This is achieved through the prevention and relief of suffering by means of early identification and impeccable assessment as well as treatment of pain and other problems (physical, psychosocial and spiritual).
WHO (2008) states that palliative care aims to assist people with life-limiting illnesses to experience quality of life until the moment they die. Palliative care should provide relief from pain and other distressing symptoms. It should affirm life but regard death as a normal part of life. Palliative care should neither hasten nor postpone death. Palliative care considers the whole person and integrates psychological and spiritual care for the benefit of the person and their family members. Palliative care is committed to supporting the family during the course of the illness and after death.
Core values of Palliative Care Australia (www.pallcare.org.au)
• Dignity of the person, caregivers and each member of the family
• Respect and empowerment of all of these individuals
• Compassion for all involved
• Equity in access to services
• Excellence of provision of care
• Family-centred practice.
Definition of a life-limiting illness
A person who has a life-limiting illness is someone who has 0–6 months to live. This may be due to
• Cancer
• A progressive neurological disorder
• AIDS
• Other degenerative diseases
• Experiencing a serious accident, attack or natural disaster
• Experiencing an unexpected and serious life-threatening medical occurrence (e.g. cerebrovascular accident [CVA] or cardiac arrest [CA]).
Behaviours a person experiencing a life-limiting illness might exhibit
A person experiencing a life-limiting illness will exhibit a range of behaviours that might include
• Acting as though nothing is wrong one day and being totally withdrawn the next
• Being quiet and thoughtful one day and chatty the next
• Forcing themself to do something regardless of their pain or fatigue
• Sleeping excessively because of pain medication, fatigue and depression
• Being unable to sleep and thus being awake all night
• Being short-tempered and dismissive towards carers and health professionals
• Being teary sometimes
• Wanting to discuss spiritual issues or beliefs about life after death.
Possible emotions a person experiencing a life-limiting illness and their family members and friends might experience
A person experiencing a life-limiting illness and their family members and friends might experience emotions related to
• Bargaining (If I do this it will cure me)
• Denial
• Rage
• Resentment
• Envy
• Depression
• Anxiety
• Confusion
• Fear
• Despair
• Hopelessness
• Desperation
• Acceptance.
A person experiencing a life-limiting illness may experience physical, emotional, social, cognitive and spiritual distress.
Physical distress may include
• Pain
• Fatigue
• Anorexia
• Restlessness
• Breathlessness
• Oedema
• Disfigurement
• Bladder and bowel disturbances
• Neurological dysfunction.
Psychological or emotional distress may include
• Sadness
• Shock
• Uncertainty
• Fear
• Anxiety
• Depression
• Loss of control
• Role changes
• Loss and grief
• Change in self-esteem
• Change in body image.
• Isolation
• Lack of support
• Financial issues
• Carer stress
• Family conflict
• Inability to manage social situations