Expenses pushing dementia sufferers to do without their vital medicine

Dementia sufferers should be helped by the government to buy medication, which is not available for free, it is being suggested.

The pills, costing about €150 a month, are deemed too expensive for elderly sufferers to buy and, so, many decide to go without, even though the medication could make a big difference in the progression of the debilitating disease.

The recommendation is one of 10 included in a national strategy on dementia, compiled by the National Dementia Strategy Group. The strategy was presented to the government earlier this year.

A recent survey, commissioned by the group, found that the cost of taking care of a patient with dementia could exceed €400 a month, with the biggest expense being medicine.

Although the medicinals are not effective on everyone, group chairman Charles Scerri said they worked on 60 per cent of those who took them and made a difference in dementia's progression.

The expenses shoot up when relatives need to make structural changes at their house to ensure safety. This includes switching from a gas to an electric cooker and introducing safety features to ensure the patient does not wander off.

Many need to get a cleaner regularly because looking after a dementia sufferer leaves them with no time to clean the house. The strategy calls for an improvement in early diagnosis and intervention, better support services within the community for dementia sufferers and their carers and also better awareness about available services. In fact, 64 per cent of respondents to the questionnaire said there was not enough information on support services, Dr Scerri said. The majority did not even know about the existence of a support group and a helpline for both sufferers and carers.

Another half of respondents did not know of the activity centre for dementia sufferers located at St Vincent de Paul Residence. Others were unable to make use of it because of difficulties accompanying their relatives there.

"Ideally, we should have dementia activity centres scattered around Malta," Dr Scerri said. He explained that centres geared towards dementia sufferers had better signage to avoid confusion and special locks to keep patients from wandering around.

Activity centres also give some respite to carers. It is estimated that each of the 4,500 dementia sufferers in Malta have four or five carers directly involved in taking care of them.

Dementia is very taxing on carers, with 60 per cent of them suffering from a form of psychological problem requiring medical care.

More than a fifth of relatives did not even understand the concept of palliative care, which, Dr Scerri said, was sorely needed in Malta.

"Towards the end, they are very fragile and need a lot of help," he said, adding that, abroad, help was also offered to relatives.

Dr Scerri said the Hospice Movement, which was already doing sterling work among cancer patients, should be strengthened to extend its services to dementia sufferers.

Moreover, outreach teams - made up of occupational therapists, physiotherapists, social workers and psychiatric nurses - should visit patients in the community.

Dr Scerri explained that keeping patients in the community, in an area they were used to, was ideal because going to a new place could confuse them even further.

The strategy also calls for a legal framework to deal with dementia sufferers.

"It is time to start thinking about advance directives," he said, adding that this involved patients in the early stages of the disease declaring who should make decisions for them when they were no longer capable of doing so themselves.