Diskors fil-ftuh tal-konferenza tal-Caritas-Fiapa dwar Alzheimer

Ladies and Gentleman,

It is indeed with great pleasure that I open this International Conference on Alzheimer’s disease: Alternatives to Hospitalisation and Assistance to Caregivers. I would like to thank the organising committee for inviting me. This is an opportunity to share our thoughts on how we can continue to develop services to help people with Alzheimer and their caregivers.

Over the last decade, Alzheimer has attained increased public attention in view of the growing number of people diagnosed with this condition. At long last this condition is been given the importance it deserves. It seems that finally the world has come to term that Alzheimer has been ignored and overlooked for too long.

Worldwide a new case of dementia is diagnosed every four seconds. Dementia as you know encompasses a number of clinical conditions. The main cause of dementia is Alzheimer Disease. And this explains the inter change of the word Alzheimer with dementia. The likelihood of developing dementia increases with advancing age. In fact it affects about 1 in 5 persons at the age of 80 years and 1 in 3 at the age of 90 years. In Malta, there are currently over 4,500 people with dementia. This figure is expected to 6,000 over the next ten years.

The societal costs of dementia are enormous. A recent study published by the prestigious Karolinska Institute in Sweden estimated that, in 2009, the global cost of dementia was 608 billion US dollars. This sum is equivalent to 1% of the world’s Gross Domestic Product. In practical terms this means that if dementia was a country, it would have been the 18th largest economy in the world and would be invited to the G20 meetings. As the number of dementia cases increases so does the cost. In fact the cost of dementia  is expected to triple in the next twenty five years.

Alzheimer is a progressive condition. People diagnosed with this condition slowly and gradually will lose their cognitive abilities. These patients will eventually require increasing assistance with their activities of daily living. People with Alzheimer rely on the support of others. They are usually looked after either by formal or informal carers. In 2007, Dementia UK, reported that 63.5 % of people with dementia are cared for in the community. 

Our departing objective should be to ensure the dignity of patients with Alzheimer. People with Alzheimer should as much as possible be cared in the community because that is the place they know. It is where they were born, where they bred their children and lived with their loved ones. I came across a quote from the famous British Actress Carey Mulligan which in my opinion sums it all and I quote “Those with Alzheimer are still people. They are still individuals.  They are still unique. They still have characters.  They still have their stories. And most importantly they still need interaction with other human beings”

I sincerely believe that we should keep this in mind when plotting the best way forward for patients with Alzheimer.  And please let us plot the way forward with them rather than doing it for them. They still have a voice, they still have a contribution to make and they still have a right to determine their own future.

Unfortunately Alzheimer is very often only considered from a medical perspective – thus considerable emphasis is usually made on the initial assessment, investigation and diagnosis. However, the story does not end here. Diagnosing the ailment is only the beginning of a long journey. A treacherous journey characterised by slow progressive deterioration and often made worse by acute-on-chronic episodes. For example, people with dementia report increase incidence of falling, increase traumatic injuries and are more prone to Infections.

Alzheimer is much more than a physiological problem. In reality Alzheimer impacts not only on the patient per se, but also on the immediate family who carry most of the burden of informal care. This is even more critical in small countries like Malta with very strong and durable family core structures. Research suggest that  caregivers and relatives of patients with dementia face great difficulties and are at a greater risk of developing mental health problems including depression.  It is therefore the policy of my government to continue to support these individuals within the community and try to meet their needs through person-centred community services.

Alzheimer Centres can be very helpful to support people with dementia and their caregivers. Such Day Centres provide an opportunity not only for day care and but also to help and support relatives on how to deal with common day to day situations The Activity Centre at St. Vincent de Paul Residence provides a very similar role. I have to add that in Malta we have 19 Community Day Centres for the elderly disseminated across the island with a daily attendance of approximately 2000 elders. Amongst these are a number of elderly people with Alzheimer who find respite and support within these day centres. 

Home safety is another growing concern for relatives of people with Alzheimer. Technology is providing a helping hand and in Malta’s case the Telecare continues to be a very popular service. Our aim is that together with the service provider we can introduce other services apart from those already offered by Telecare. This is because technological devices can nowadays provide for monitoring against gas leaks, fire and flooding. Technology is also available to assist us in monitoring wandering patients. GPS devices can facilitate patient tracking if patients get lost.

People with Alzheimer in the Community are in need of additional home care support.  Home help should not be limited to domestic activities like home cleaning, shopping, cooking but it should also involves assistance with personal activities including bathing and dressing. In Malta this is done through a number of community services which include Home Help, Community Nursing, Elderly Community Outreach team, Meals on Wheels, Handy Man Services and many others. In fact we provide not less than 7500 hours of Home Help every week to elderly people living in the community.  Additionally our nursing community service through MMDNA carry out 1,500 home visits every day and I can safely say that most of their clients are elderly persons.   

Respite care is also considered an essential service to help caregivers of people with Alzheimer. Respite care may take various forms depending on individual needs. Some carers may need support to take e few days off or to attend for a family gathering. Sometimes respite care is required to support a caregiver who is unwell or needs hospitalization.

Caregivers of people with Alzheimer are usually very stressed and concerned about their ability to cope indefinitely with such a demanding role. They often ask the questions, “What will happen if I need to be hospitalised or if I die?” or “Who will take care of my loved-one?” Caregivers need reassurance that prompt assessment and support is available in this unfortunate eventuality.

People in the more advanced stages of Alzheimer may still be cared in the community if their relatives wish and are able to take care of them at home. Obviously there will be circumstances where people with Alzheimer need long term care. In Malta during the last four years government has increased the number of Long Term Beds for the elderly by nearly 900 beds.   Additionally all new homes of the elderly being built are dementia friendly.

Malta has not been idle infront of the challenges posed by Alzeihmer. Doing nothing is not an option and indeed Malta has been amongst a few countries that have embarked on compilling a dementia strategy aimed at enhancing the quality of life of individuals with dementia, their carers and relatives. In May 2009, the Malta Dementia Strategy Group was set up. After a thourough consultation process a Dementia Strategy has been finalised. This Dementia Strategy will soon be officially launched. It is a long-term strategy based on skills, knowledge and hard work involving both professionals and the community.

Over these last five years, I have witnessed a dramatic rise in the demand for services and I am sure that this trend will continue to increase. I hope that this conference will raise more awareness about the need to develop even more supportive structures for people with Alzheimer and their caregivers. 

Conclusion

In conclusion may I recall that when the financial crisis hit the world many were taken by surprise?  The world was not prepared and many countries are still struggling with the devastating effects of this financial crisis.

Demographic projections of the World population are very telling. The world is getting older and older. Consequently the incidence of Alzheimer will most definitely continue to increase. Alzheimer will probably be the future pandemic. Its effects although different from those of the financial crisis may be as equally devastating. If this pandemic finds us unprepared it is only us to blame.  This time round we have been warned.

So being complacent is not an option. We have to act. And we have to act now. So this is the right conference with the right topic at the right time.

I wish you all a successful conference.