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WORLD ALZHEIMER'S MONTH - 'LET'S TALK ABOUT DEMENTIA'

Caring for people living with dementia must be a priority during and after Covid-19 pandemic

As World Alzheimer's Month comes to an end, The Gibraltar Alzheimer's & Dementia Society [GADS] remains committed to people living with dementia and to improve the lives of families affected by this disease. In this article, GADS reviews the impact of the Covid-19 pandemic on people living with dementia and their families, and offers some thoughts for the months ahead.

Throughout September many people have approached GADS to talk about dementia, about their everyday challenges and also how the coronavirus is making their daily lives much harder.   Covid-19 has negatively impacted many lives throughout our community because of the change to normal routines. For some people living with dementia or caring for someone with dementia, the change has been devastating.

The Covid-19 outbreak has highlighted the lack of preparedness of health systems globally to provide routine services and support to people living with chronic conditions such as dementia.   Most likely dementia does not increase risk for Covid-19, just like dementia does not increase risk for flu. However dementia-related behaviour, increased age and common health conditions that often accompany dementia may increase risk.

The recent months have been challenging for us all and for people with dementia they have been especially so. To protect people living with dementia from Covid-19, some services had to change and many have been missing important social connections and activities that are so crucial for their well-being.   People living with dementia may have memory loss and increased confusion so sticking to a regular daily route is essential to their care, but when their route is disrupted it often affects their behaviour and stress levels.

LIVING AT HOME WITH DEMENTIA

The threat of Covid-19 remains real and families feel anxious as these have been very worrying times for families looking after their loved ones with dementia. Some people have been 'cocooning' or staying at home to minimise the risk of contracting the coronavirus and others, because of restrictions, have been unable to be with their family and friends. In some cases, this has increased frustration and anger at not being able to do what they have always done.

During lockdown families were not allowed to visit their loved ones at home and this was understandably difficult.  Isolation during the pandemic has been a heavy burden faced by our most vulnerable and many people living with dementia have endured an extended time alone without their family and friends and without fully understanding why.   As Covid-19 continues, the situation continues to be stressful for everyone - it is important that our most vulnerable and especially those living with dementia remain a priority and are not socially excluded.

Daphne Alcantara, chairwoman of GADS, said: "Times are tough for families affected by dementia. Many people are struggling to help their loved ones stay active and engaged at home. I pray that there will not be another lockdown or further restrictions on our most vulnerable, including those living with dementia, who are already struggling with their normal routines disrupted, making them feel lonely, anxious and increases the fear of being abandoned and risk depression.”

LIVING WITH DEMENTIA IN RESIDENTIAL CARE

Our residential homes were closed to visitors from the start to the response to Covid-19 and were the last element to be released from lockdown, even as the restrictions in other areas were released and families were not allowed to visit their loved ones.

Social distancing and visiting restrictions deprived residents of vital stimulation and support from family visits, which can lead to marked deterioration in their well-being.   This has put significant emotional strain on families as they grappled with questions around when they would be able to visit next and what conditions their loved ones would be in when they were allowed to visit.  

Care homes are understandably cautious about visits because of the risk of coronavirus infection but families are worried about the strict visit restrictions  and lack of  'family'  contact at Gibraltar’s residential homes and are also concerned that their loved ones have difficulty understanding 'cocooning', the use of PPE, making it difficult for them to recognise their carers and service providers, resulting in them feeling abandoned, confused and scared.

Loneliness and isolation are already noted risk factors in dementia and the lockdowns preventing families from interacting with their loved ones in long-term care serves to hasten the decline.   Social and mental stimulation are among the few tools that can slow the march of dementia, it is not just the loss of interaction, families fill in a lot of gaps at residential homes, they do much, such as feeding their loved ones, they advocate and communicate.   

Mrs Alcantara said :  "It is not unusual, for example, for a partner or close family member to spend many hours with their loved ones, helping them very slowly to eat and drink.    Families are calling for the residents’ individual needs to be recognised, for individual visiting care plans and for a designated family member to be allowed to continue  'normal'  visits,  by including them on an equal footing with staff and supplying them with all the necessary PPE, regular temperature control and testing.   Families are essential! They are an integral part of the care system.”

EARLY DIAGNOSIS

Covid-19 has led to significant changes in the way that routine health and care activity is currently delivered.  People have avoided accessing services due to fear of contracting Covid-19 or being a burden to the GHA.   Also, people over 70, a population at higher risk of dementia are being deterred from face-to-face assessment due to social distancing measures. This will greatly impact on the ability of GP's to spot the signs of dementia when patients access services for other reasons.

An early diagnosis of dementia opens the door to future treatment, support and care, it helps people to plan ahead while they are still able to make important decisions on their health and care support needs.   It also helps them and their families to receive practical information, advise and guidance as they face new challenges.

People should be able to contact their GP if they are worried about their memory or other symptoms.   Routine screening such as GHA health checks and medication reviews need to be re-prioritised to avoid missing opportunities to identify patients with early signs of dementia who may otherwise not approach health services about their symptoms.   GP's should not dismiss dementia symptoms as just part of old age, but should treat patients sensitively and seriously and seek a formal diagnosis and appropriate treatment.

Mrs Alcantara said:  "I am concerned on GP's referrals to the Memory Clinic for further assessment and that there will be a growing waiting list not only because of delays in people accessing healthcare , but also how memory services will handle the backlog.   There is also uncertainly regarding how people who are waiting for assessment and diagnosis will be supported, particularly given the present circumstances where people may struggle to cope with their symptoms in the absence of medical care and support.   I am further concerned at Dr Rawal's (Acting Medical Director) statement in the Gibraltar Chronicle reporting a post-lockdown surge in the number of patients the GHA is seeing and acknowledged concerns that people who were unable to visit a doctor because of the restrictions may now face a worse diagnosis and that will take months of catching up.   This will mean that more people with dementia are living without a diagnosis, unable to access professional advise, as well as vital treatment and support services.”

"Moving forward we must ensure access to a prompt dementia diagnosis. If no action is taken we risk losing all the progress made over recent years and see a drop in the number of referrals to the Memory Clinic and we will also be losing the ability to improve and better the lives of people living with dementia.   A person-centred service (face-to-face) with PPE is essential when the benefit of an assessment and diagnosis outweighs the risks of a face-to-face appointment.   Without a full and comprehensive assessment there may be an increase in the diagnosis of  'unspecified dementia',  receiving an accurate diagnosis of dementia is critical to good management of symptoms and must not be de-prioritised in the face of backlogs.   People with a provisional diagnosis of dementia should be invited to return as soon as possible for a face-to-face appointment to confirm the diagnosis and discuss their treatment and their support care options."  

"We are yet to see the immediate impact on dementia, with fears that the restrictions will have interrupted the diagnosis and dementia journey for many.   It is crucial that people receive the right information at the right time;   that GP's and the Memory Clinic work together to proactively identify people at risk of dementia and this must be accompanied by information about their services offering a smooth referral process.   We cannot wait until restrictions end to consult a doctor about experiencing any symptoms of dementia."

"HM Government, Public Health, GHA, ERS, Care Agency, Meddoc and other relevant departments have to be congratulated when it comes to the management of Covid-19 but I am worried and concerned that lockdown and restrictions have greatly impacted our health and social care system and in particular mental health services that are crucial for people living with dementia and their families."

"We are just beginning to observe the grim consequences of this imposed isolation and restrictions - a necessary step, taken with the goal of saving lives, but which in the end may cause even more destruction and despair in the lives of our most vulnerable and people living with dementia."

"While it is right that the threat of Covid-19 has been the government’s main focus, we cannot lose sight that dementia is still our greatest long-term health challenge and people affected and living with the condition who have born the brunt of the pandemic need to know that government is still committed to ensuring that dementia remains a priority.”

Dementia is a growing challenge. The number of people diagnosed with dementia is projected to rise worldwide and Gibraltar 'is no different to the rest of the world'.

By talking we will help break down the fear and stigma - we encourage everyone to seek support and advise.

For further information contact: GADS - Tel : 56001422 Email : gads@gibtelecom.net​ 

Or visit GADS Facebook  :  www.facebook.com/gibraltaralzheimersanddementiasociety