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‘Journey through the diagnosis of dementia’

To mark World Alzheimer’s Month this September the Gibraltar Alzheimer’s and Dementia Society is raising awareness about the dementia and the need for a National Dementia Committee. The Society is holding a month-long campaign including events and the Chronicle has published articles weekly on Tuesday’s during the month of September, with the last in today’s edition.

The release of the World Alzheimer Report 2021 launched on Sept 21st, raises some important and challenging questions for governments, healthcare systems, care managers and researchers with a focus on testimonies of people living with a dementia on what and how the system can, and must, be improved. The global report highlights the astounding fact that 75 per cent of all dementia cases worldwide, over 41 million cases go undiagnosed, making effective support all the harder to access.

The global health crisis Covid-19 pandemic will likely have lasting economic, logistical and healthcare system consequences. Whilst attention has been rightfully focused on combating this infectious disease, such dedicated efforts have greatly strained healthcare resources. One of the outcomes of this worldwide crisis is that individuals and their families have had to wait to obtain dementia diagnostic assessments, thus many remain undiagnosed.

Many people still think that dementia is a normal part of ageing, but it's not. Dementia is a chronic disease that affects the brain and can lead to loss of memory, difficulty with language, impaired reasoning and a change of personality. Better diagnosis, early intervention and support to maintain independence may help slow the progression of dementia and can improve quality of life for people with the condition and for their families and carers.

The first point of contact in healthcare for people with symptoms that make them question whether they have an emerging dementia disorder is, in most cases a primary care physician (GP), will refer the patient for specialist assessment which will include blood tests and brain scans. However, lack of competence, training and skills in dementia as well as negative attitudes towards dementia diagnostic work-ups by GP's are often regarded as significant barriers. ADI reports that clinician stigma is still a major barrier to early diagnosis, with one in three believing nothing can be done.

Daphne Alcantara, GADS Chairperson said how a wife now caring for her husband with dementia told the charity:
"My husband developed symptoms of dementia in 2018 and it took over two years and a change of GP before we got a diagnosis of dementia. Our GP just wouldn't listen and kept telling us there was nothing wrong with him when we knew full well there was something going on, but we didn't know what? We had to change GPs before we got a medical practitioners to listen to us and take us seriously, it was very frustrating but once we found a GP who understood what was happening, she took action immediately and my husband got the help he needed, but it was long journey for both of us."

A timely and accessible diagnosis of dementia is critically important, just as it is for any other health condition, it is a key factor in enabling people affected by the condition to make plans, to get the help they need and to live the best life possible. By not being able to get a diagnosis, people affected by dementia may not understand what is happening to them and may not be able to get the help they desperately need; they are effectively denied the right to live their best possible lives with a health condition for which there is not cure.

As our population ages, Alzheimer's disease as well as other forms of dementia and major neurocognitive disorders are on the rise. Dementia has no boundaries and it does not discriminate, it affects people of every gender, culture, ethnicity, religion, sexual orientation and ability. Dementia affects individuals from all levels of education, professional and work backgrounds as well as financial status. While the number of people being diagnosed with dementia increases so does the number of people who find themselves in the role of carer without the knowledge or training to manage the condition and properly care for the person living with dementia.

We know that we depend on cross-frontier workers and they form a very considerable part of our social care workforce and their work is valuable and important to our health and social care system, but we also know that their role is reliant on very good understanding and communication skills. It is absolutely undeniable that the lives of many people living with dementia currently living at home or in residential care home would be far worse without the contribution of these hardworking carers, but despite all their hard work and good intent we hear stories from the public with loved ones living with dementia at home, who feel that their family members' quality of life is actually inhibited by their inability to understand and convey their thoughts to the carers.

I am often asked whether local service providers for people with dementia employ staff who speak English? I do believe that the level of care can be compromised when the carer has difficulty understanding the service users care requirements. Having said that, I also believe that carers, in the main, have a genuine care ethos, but it is necessary for them to be bilingual in English and Spanish. Currently most carers only speak Spanish and they are placed in the homes of people with dementia and sometimes communication problems can result in bad treatment for both parties.

One family member told us:
"My father's biggest challenge is trying to understand the person that is there to look after him".
Service providers are contracted by HM Government to supply home care for the vulnerable and the elderly (many living with dementia). These employers are responsible for recruiting staff that are trained to a specific set of standards and know how to act with compassion and respect so that they can provide the right care, but they also need to competently speak and read english as communication will be a key part of their role.

Change is not good for a person living with dementia and when they have lived in their own homes for many years, it feels safe because they know exactly where everything is - their memory might be getting worse but the routine and familiarity to their surroundings means they are still managing to cope and they and their partner have no desire whatsoever to move, in fact, even thinking about it upsets them.

So it is hardly surprising that someone living with dementia might want to stay living at home and although you might think they'd be safer somewhere else you could be wrong because people with dementia with the right support often benefit in numerous ways from remaining in a place they are familiar with for as long as possible. Supporting them to remain independent for as long as possible is crucial for people with dementia; retaining independence and the ability to carry out the activities of daily living allows people with the condition to live in their own home for longer.

However, support with independent living is not just about keeping a person safe in their home, it is also about ensuring a person is supported to be independent outside their home, in the community, by retaining a familiar environment and keeping routines of daily activities they can help to manage the symptoms of the condition and reduce psychological worry and stress for both the person living with dementia and their partner.

HM Government have build homes for senior citizens e.g Bishop Canilla, Charles Bruzon, Albert Risso and Sea Master Lodge with consideration given to their design including shared recreational areas to socialise and paying attention to individual needs by providing comfortable and safe living.

We believe that these homes could be supplemented with assisted 24/7 (in house) living facilities ensuring a caregiver is available to address any personal needs and provide day and night care in their own homes. This will enable people with dementia (and other vulnerable groups) to be better supported in their own homes for as long as possible and their partners are also comfortable and safe to do so.

GADS would like to see Housing, Health and Social Care services working together in achieving this and in addition providing a strong dementia-friendly environment."

"As we end World Alzheimer's Month we call on HM Government to deliver a National Awareness Raising Campaign around the warning signs of dementia and timely diagnosis in line with the WHO Global action plan on the public health response to dementia,” Ms Alcantara said.

“There is a pressing need to develop Public Awareness Campaigns that educate, enact policies that bring about change, create programmes that expand accessibility and endorse support systems that assist people diagnosed with dementia, their families and all the many carers. We need to embrace health literacy about dementia - information they can understand and how to access support they can rely on. Empowering this concept will ensure the best quality of care, safety and dignity of the person diagnosed with dementia".

For guidance and advise contact GADS on: Tel: 56001422 Email: Facebook: gibraltaralzheiemersanddmentiasociety

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