Alzheimer’s sufferers cannot wait

Alzheimer’s disease (AD) is an irreversible, progressive illness of the brain which slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest of tasks till it progresses to death. AD is the most common cause of dementia with symptoms appearing after the age of 60; if hereditary at a much earlier age.

Dementia is defined as “the loss of cognitive functioning, thinking, remembering and reasoning to such extent that it interferes with a person’s daily life and activities”. This is the result of changes in the brain, changes believed to start as early as 10 to 20 years before the problem is evident. The affected brain regions begin to shrink until, in the final stages, the brain tissue would have shrunk significantly.

Early signs of AD include memory loss, recognised by frequently forgetting recently learned facts, and the inability to register new information.

In the mild phase, the memory loss gets worse and other cognitive abilities also start deteriorating, affecting the ability to carry out routine daily activities resulting in the patient wandering and getting lost, finding trouble handling money and paying bills, and having poor judgement and mood and personality changes.

In the moderate phase, other areas of the brain are affected, resulting in problems with language, reasoning, sensory processing and conscious thought. Problems get worse when there is inability to recognise family and friends and patients are unable to perform tasks involving a number of steps and cope with new situations. It is also the time when psychiatric problems (for example, aggression) come into the picture and the care needed becomes more intensive.

In severe AD, patients cannot communicate and are completely dependant. With time they end up in bed most of the time and the body begins to shut down.

In addition to the impact of disease on the sufferer, the burden of AD is felt acutely by the caregivers as it impacts on their social, emotional and physical well-being. The burden on these family caregivers affects their overall quality of life health-wise, even to the point that they end up suffering stress and it is reported that 80 per cent of caregivers suffer clinical depression. AD patients need constant attention resulting in financial burdens to the caregivers as they have to give up jobs and personal interests, besides having to pay doctors and buying very expensive medications not only for the patient but also for the caregivers themselves. Very often, caregivers of working age turn to thesocial services department for assistance. The inability of carers to cope as the disease progresses often leads to patient institutionalisation with financial implications for the family, the state and society as a whole.

Strategies to ease the burden on the caregiver centre around the reduction of patient symptoms to prolong the period during which the patient can participate in their own care. Hence, the importance of detecting and treating the illness at the earliest stage possible. Starting treatment at an early stage has been shown to make a difference in the dementia’s progression in about 60 per cent of patients and improved quality of life for the caregiver.

AD is a major economic burden to patients and their families, to the country’s healthcare system, to the social services department and to the business community. While direct costs are obvious, indirect costs include unpaid caregiver time, the patient’s lost labour services and alterations to the home to render it safer and more user-friendly. By delaying progression of the disease to the more costly stages, savings are realised through a delay in the need to institutionalise. This delay also reduces caregiver hours by increasing the time spent in less severe stages of the disease, thereby delaying the increase in caregiver hours required. Besides, strengthening community services in this sector is also greatly beneficial to the patients and their loved ones because they get to spend more time together in a meaningful way as patients tend to get more confused in a new environment when they are institutionalised.

The aim of treatment is to slow the symptomatic progression of the disease and reduce the time spent in the severe phase. The economic rationale for treatment hence includes: improved quality of life for the patient; improved quality of life for the caregivers; a delay in institutionalisation and the time spent there; reduced direct medical costs and a lighter burden on the caregiver.

Through delay in symptomatic progression, pharmacological therapy can result in cost savings for the health department and the social services department by prolonging patients’ time in the mild-to-moderate stages where costs of care are lower; delaying institutionalisation; delaying the need for skilled nursing facilities, assisted living facilities and home help care and decreasing the use of antipsychotic medications to patient and carer through the free medication service.

Nearly all EU and EEA countries have, in fact, endorsed this conclusion by including the medication of AD in their free or reimbursement systems. Malta and Latvia are the two countries that, so far, do not in some way or other subsidise the cost of AD drugs. Lately, Bulgaria started the process of reimbursing hospitalised patients and there is a drive to include all patients. So far, Malta seems not to endorse the benefits of treatment in relation to cost savings, the rationale behind this decision being unclear and out of step with the rest of Europe.

The government said it intends to introduce new medicines. In Malta, we have over 4,500 patients suffering from dementia. Because of our ageing population, the numbers are expected to double in 10 years’ time. The earlier we start dispensing treatment for AD patients under the Schedule V scheme the earlier the cost benefit and savings for the country in the health and social services sectors.

Dr Farrugia is shadow minister for social policy.