Far more than memory loss

The pain of those close to someone who has dementia starts early, even though the gradual onset of symptoms may take a while. The realisation that the condition will gradually worsen makes it a difficult situation to bear.

Anne Cuschieri, of Sliema, knows about the difficulties involved for both patients and those who care for them as her mother had the condition.

“One of the most difficult things to witness was her awareness that something had changed and that she had no control over it,” Cuschieri said, re-living the pain of seeing her mother’s condition deteriorate.

She was speaking of the early stages of the condition, when she could see that her mother felt helpless towards the changes happening to her.

Cuschieri spent 13 years taking care of her mother, and was one of the first members to join the Malta Dementia Society. She spoke about her experience of the condition and said that when her mother was diagnosed with it, even less was known about it than now.

It is not just memory loss one has to deal with, as Cuschieri pointed out:

“Eventually the memory loss began to develop into something much more threatening and endangering. She began to run away from home, or leave the house and wander onto busy roads without a care, endangering herself and others.”

Cuschieri also remembers many other occurrences that led her to the decision to place her mother in a care facility, to ensure constant professional attention.

“My mother was at a home for eight years, where she was given the best care possible, but it was painful to see her suffering such a slow death. The effects of the condition take their toll on all family members, and it’s horrible for the sufferers themselves.”

Cuschieri said that her life changed completely once the condition started taking hold. She had to move house to be closer to her mother.

“Up until the time she lived at her own home, my mother was very well looked after by her children and my father, who was retired at the time, but it still wasn’t enough.”

She spoke about how difficult it is to admit people who have dementia into care facilities, with waiting lists being as long as 2,000 applicants for public homes, and privately owned facilities costing a fortune.

She spoke about both the emotional and financial toll the condition takes on relatives, where it is not only hard for them to cope with the gradual “loss of dignity” of their relatives, but the cost of the required medication being incredibly shocking.

“There is only one pill which is subsidized by the government, and the rest of the medication costs a fortune. I remember the tablets we used to buy my mother cost us around Lm50 a month, not to mention doctors’ visits, facility costs and other supplies like powdered foods and such.”

Dr Charles Scerri, a resident senior academic at the Faculty of Medicine and Surgery at the University of Malta and the National Focal Point on Dementia, also spoke to MaltaToday and said that all medications are available as an out-of-pocket expense, with only one being included in the Government Formulary List and thus available for free by the state following the authorization by consultant geriatricians, neurologists and psychiatrists.

Scerri said that the drug in question is mostly recommended for mild-to-moderate dementia, with other drug alternatives for symptomatic treatment of dementia in its mild, moderate, and severe form having to be purchased with a cost that can exceed €100 per month.

“Taking both informal and formal costs, dementia is the most expensive medico-social condition worldwide. According to data from 2009, one per cent of the global gross domestic product went to dementia, which is roughly equivalent to a staggering US $604 billion annually. This data goes back to 2009, so we can only imagine how much worse the figures would be now that the condition has increased so much,” Scerri added.

Cuschieri spoke about the urgent need for more subsidies, at least on the medication, but she also praised the recent developments that have taken place since her mother’s passing, particularly in raising awareness and catering for the needs of those who have dementia.

Scerri spoke about the various initiatives that are currently in place, including dementia clinics that are available in the community, an activity centre and two dementia wards at St Vincent de Paul’s Residence, a Memory Clinic and the Dementia Helpline at the Karin Grech Rehabilitation Hospital. Memory classes are also organized at Karin Grech, for individuals with dementia and their family members. Karin Grech also features a Memory Clinic, which has been operational for some years.

“The clinic is a specialized out-patient clinic for individuals who show symptoms of cognitive impairment that may be indicative of dementia. The clinic is run by a team of professionals who carry out a thorough assessment of the patient’s condition and functional status.”

Scerri also spoke about the National Dementia Strategy, which will be launched by the Parliamentary Secretary for the Rights of Persons with Disability and Active Ageing, Justyne Caruana, in the coming months.

“The strategy highlights various measures that need to be implemented in order to achieve its main objective of enhancing the quality of life of these individuals and those who care for them. Actions that are necessary include an increase in the awareness and understanding of dementia, the provision of timely diagnosis, the availability of a trained workforce, improving community and central services, promoting an ethical approach to dementia care and strengthening research in this field.”

Scerri also said that although the document has not yet been published, a number of initiatives have already been adopted, including the organization of information sessions targeting healthcare professionals who come into direct contact with individuals with dementia on a daily basis, meetings with mayors of local councils in Malta and Gozo and the launch of two information booklets on dementia.

“Overall, the National Dementia Strategy document contains 82 recommendations which need to be implemented by 2023,” he added.

Cuschieri urged anyone who suspects a relative or friend may have dementia to seek professional advice and get as early a diagnosis as possible. People should visit their GP or call the Clinic at Karin Grech, where they can get appointments with experts and undergo tests to get assessed properly.

Scerri explained that one of the worst problems with the condition is that many people take too long to seek help:

“The majority of individuals with dementia are not diagnosed early, and as a result, diagnosis is often made when dementia has reached a stage that has a significant negative impact on the health and cognitive functions. Unfortunately, there is still the belief that dementia is a natural part of ageing, thus limiting timely diagnosis. It is therefore important that the individual seeks professional advice upon noticing the first hints of the condition.”

Cuschieri added that the fact that dementia remains somewhat of a taboo subject in some closely knit communities is a reason for people avoiding help at the early stages of dementia.

“The Malta Dementia Society will attempt a pilot project to this end next March. The society will try to work with various local councils to offer support on a more local level,” Cuschieri said.

Cuschieri also encouraged people to join the Dementia Society, where talks are held on a regular basis to keep people up to date on the latest developments in the research about dementia. The society also provides a unique opportunity to get advice on the right course of action in an informal and unthreatening environment.

“The Society also organizes cultural tours and visits to try to bring people who have Dementia and their relatives closer together so that they can share their experiences, and to encourage them to feel part of the community at large.”