Dimentia: Forgetting the forgetful

No statistics exist on the predominance of dementia on the Maltese islands, however global figures estimate about 1% of the world’s population is afflicted with this disease. Dementia becomes more and more prevalent among older members of society. 30% of people over the age of 80 are known to suffer from it. This figure increases to 50% in people over the age of 90. The predominance of this disease is set to double in the next 25 years as a result of an ageing population.

Charles Scerri is the secretary of the Malta Dementia Society and the chairman of the National Dementia Strategy Group. He is concerned about the state of care for the increasing number of patients suffering from Alzheimer’s.

“There are not many options out there if you have to look after a family member suffering from dementia and something has to be done.”

The National Dementia Strategy Group was set up to give government strategic recommendations on how to handle dementia in Malta. The document was presented to parliamentary secretary Mario Galea in January of this year, however no response has been given as of yet.

Dementia is a progressive, irreversible condition and is caused by degeneration of the cerebral cortex, the part of the brain responsible for thoughts, memories, action and behaviour leading to cognitive impairment.

Primary symptoms include memory loss or misplacing valuable items such as a wallet or car keys. This progresses to forgetting appointments, where the car was left or the route home, followed by more profound losses such as forgetting the names and faces of family members. Other symptoms include planning impairment, language comprehension, poor judgment, decreased attention, behavioural changes and psychosis.

The document on national strategy has been compared to the UK’s NICE (National Institute for Health and Clinical Excellence) guidelines on the treatment of Alzheimer’s, however it goes a step further in that the document gives recommendations required to improve quality of life in all areas.

NICE guidelines only give recommendations on medication available and even these contain a number of flaws. Some of the drugs listed in the guidelines are still in the experimental stage. Also, listed drugs do not necessarily work on everyone, though when they do, their quality of life is greatly increased.

Throughout the EU, medication for Alzheimer’s is supported by government and distributed free of charge. Malta and Latvia are the only two countries where no help is given. Bulgaria used to be listed with Malta and Latvia but has recently added Alzheimer’s medication to their list of government-funded medication.

“It is shameful that Malta is listed with a country such as Latvia, where health standards are not even comparable to those in our country.”

Two types of medication exist to combat the effects of this dilapidating disease. Cholinesterase inhibitors slow down its progression while N-methyl-D-asparate (NMDA) antagonists delay the progression of symptoms, which will allow patients to maintain a functioning routine for a longer period of time. Recent studies have shown that a combination of the two types of medication produces the best results.

“If medication is taken in the recommended dosage, it could cost up to €150 to €170. Considering that the majority of patients are elderly, this takes up a large proportion of their pensions – up to 25%.

“Another thing to take into consideration is that due to their age, sufferers are usually experiencing a number of conditions that have to be managed by medication – heart disease, high blood pressure, high cholesterol levels among others – taking up more and more of their pensions.”

In Malta, the acquisition of free medication from the government depends on whether the condition the patient requires treatment for is included on the Schedule V list. Inclusion on the list means that all treatment for that condition is dispensed free of charge by the government pharmacy, whether the patient can afford to pay for medication or not.

“The problem with the Schedule V list is that it was compiled in the 1980s when little was known about dementia, therefore it was not included. No major amendments have been made to the list since then.”

Adding dementia to the Schedule V list has a huge financial implication. The total cost of dementia adds up to more than cancer, heart disease and stokes put together.

According to an article in Alzheimer’s and Dementia (Vol. 6, Iss. 2, March 2010) Malta spends a total of $96.2 million on formal and informal care of dementia patients.

Medication does not work on everyone, however when they do, the progression of the disease is significantly slowed improving the quality of life exponentially.

Medication may need to be taken for six months before they show any effects.

Medication is not the only thing that can ease the suffering of an Alzheimer’s patient. Scerri talks about structural changes in the home that can make all the difference to the quality of life experienced as well as the prognosis of the condition.

“An obvious change to be from gas to electricity as forgetting the gas on could prove to be a fatal mistake. Thermostatic mixing valves fixed on faucets prevent burning from water that is too hot and auto shut off electrical items can be installed to prevent accidents.

“Other less obvious changes are to colour code the house as much as possible. While dementia patients have problems with memory, research has shown that they can associate different rooms with different colours, limiting issues of orientation and confusion.”

With some minor changes, many dementia patients can still live independently in the primary stages of the disease, and this needs to be encouraged. During later stages, however, they tend to rely on relatives for full-time care.

“This puts a lot of pressure on the family, as children will often have to stop working to care for an elderly parent suffering from the disease. This adds financial strain to the psychological strain of having to watch the deterioration of a family member.”

The document presented to parliament also includes recommendations to improve the quality of life of the family as well as that of the sufferers.

A study by the Sterling University of Scotland, which will be published in the coming months, has observed Alzheimer’s patients in Malta and some locations in Spain being put on rotational family care. The sufferer will spend one week with one child and the next with another, as they cannot be left alone.

“This is extremely detrimental to the patient, as it only adds to the state of constant confusion.”

Government has taken a step in the right direction in the opening of two new units, taking 48 people, specialising in the care of dementia patients at St Vincent de Paul Hospital. However this is nowhere near enough support that is required at the moment, let alone in the future where dementia patients are expected to double.

“There is no encouragement to help people in the primary stage of the disease continue to live alone. Relatives end up putting their lives on hold whilst they care for sick parents. This is not a disease that takes up the last few months of a person’s life. Patients may suffer from the disease for 10 or 12 years, after which it is very difficult for their carers to get back into active employment.”

Sufferers and their families represent a voiceless segment of society for a number of reasons.

“People with mental health illnesses are not deemed credible by society. If a mental health sufferer lodges a complaint of any sort the general response is: ‘Don’t take any notice of him, he’s nuts!’”

“Relatives don’t find the time to lobby for better conditions for dementia patients because of commitments with sufferers. In later stages of the condition, patients cannot be left alone – not even for a short period of time. This is evident in the attendance of support meetings, where only 30 to 40 people ever turn up.”

There are some private facilities specialising in the treatment of dementia patients, however these are very expensive.

“We need more government support in mental health illnesses, particularly in the assistance of dementia patients and their families. An update of the Schedule V list, public assistance to patients in primary stages of the illness who live independently as well as proper hospital care have all been recommended to the government earlier this year and we are awaiting a suitable response.”