People are uncomfortable, if not alarmed, when the behaviour of someone they live with suddenly becomes ‘deviant’, ‘offensive’ or embarrassing; Grandfather becomes disinhibited, son becomes violent, wife starts shoplifting, daughter steals money from home. The unfamiliar moves us out of our comfort zone and we start to question the future, often catastrophising. Many chronic medical conditions result in behavioural changes. People hope that there is something that can be done to remedy the situation quickly so one of the first steps is to seek medical advice. It may be that the person has one of a host of acute or chronic conditions including life limiting pathology; Depression, psychosis, dementia, substance abuse or cancer. The reaction to the behaviour may also result from misinterpretation or the complainant may be the one with the problem or feel stigmatised by the experience. Once an explanation is found it is often the case that medicine could make things worse- prescriptions, hospitalisation and tests may be harmful. There is also a risk of medicalising the problem as noted by Dworkin.
In the past, medical science cared for the mentally ill, while everyday unhappiness was left to the religious spiritual or other cultural guides. Now, medical science is moving beyond its traditional border to help people who are bored, sad or experiencing low self esteem- in other words people who are suffering from nothing more than life.
Nonetheless people seek help from doctors and there is great scope to assist by sharing care with others who may be able to help with a problem for which there is no pill and people have to revise their ideas, concerns and expectations. It may be that doctors are reluctant to engage people in these circumstances because they do not perceive that they have the resources or expertise to assist with what they consider outside their sphere of influence. Nonetheless people will continue to expect assistance. Epidemiology records that the rates of chronic and complex conditions are set to rise almost exponentially as the population ages and suffers the pathological consequences of poor life style choices. At the same time the cost of healthcare is increasing to the extent that services may be rationed. Already in Australia, even with a relatively healthy economy, the government is proposing cuts to healthcare expenditure. Meanwhile the number of people living with a family member who has a condition where behavioural changes are possible, if not likely, will increase. For instance the prevalence of dementia in Australia will increase from 332,00 to just under a million by 2050. The proportion of people with behavioural changes in the context of this diagnosis is the majority of patients with an average duration of about 8 months during the illness. Such behaviours may have a profound impact on the emotional well being of the caregiver. It is acknowledged that some caregivers do not easily adapt to the stresses of caregiving and are at risk in terms of their ability to continue in their role. A failure to maintain this unpaid caring role would have a significant impact on the cost of caring for the patient who may have to be institutionalised sooner rather than later. The conclusion of a study from Sweden was that:
Informal care, measured as hours spent caring, was about 8.5 times greater than formal services (299 and 35 h per month, respectively). Approximately 50% of the total informal care consisted of time spent on surveillance (day and night).
Therefore innovations that allow the medical practitioner to quickly incorporate assistance from organisations that specialise in supporting caregivers will enhance the prospects of sustaining an effective health service for all. The services of organsiations such as Alzheimers’ Australia may be underutilised because of a failure to respond to calls of help from stressed carers. Similar observations can be made about other chronic illnesses including substance abuse, cancer and palliative care where changes in behaviour may be common and medication has a limited role.