MAA is One-Year Old! Founder Jerardin D’Souza Talks about his Love and Care towards Alzheimer’s Patients

“Although I wanted to do something for Alzheimer`s and Related Disorders, MAA founded by Jerardin D Souza gave me a platform to initiate activities for prevention, early detection and care of patients with Alzheimer`s Disease and related disorders .Since we formed MAA, awareness has been created, more patients are seeking the help of doctors, more care givers are reached out . Media like Mangalorean.com have really played a big role in giving publicity related to not only Alzheimer`s Disease but also to activities of Senior Citizens in Mangalore .We still have a long way to go .We need hospices for the care of advanced dementia care .We need day care centres and team to deliver home care .We need to have a resource centre . We need to educate people especially seniors to come for memory tests just as they come for BP and sugar tests .We need to Make Mangalore Age friendly and  dementia friendly city. I congratulate Jerardin D Souza, all the Psychiatrists ,Neurologists, Psychologists, Psychiatry Social workers,seniors  and the press who have joined hands with MAA to fight a war against dementia” – Dr Prabha Adhikari- Director of KMC Nava Chaitanya/Professor in Dept. of General Medicine-KMC.

“Alzheimer’s is an ailment which in simple language, takes one away from the reality of the present situation. Normally it is associated with forgetfulness. It is not just simple forgetfulness. It is an inability to relate the past to the present. In the final stages one no more recognizes  one’s own family, he or she lives with, mistakenly takes the kitchen for the toilet or any other such gross discrepancies. Today while Alzheimer’s is spreading fast, we have to find means of avoiding it by keeping the mind active, playing indoor games, solving cross word puzzles and other such, without getting alarmed over forgetfulness of immediate things which comes with ageing. At the same time the past is almost indelibly written in the memory. We must keep our minds active and receptive at all times. With the enthusiasm of the Founder Director Jerardin D’souza, the Mangalore Alzheimer’s Association is moving  ahead.  We wish every success and abundant service to the association”- Dr Olinda Pereira- Founder of Vishwas Trust/Former Principal of Roshini Nilaya School of Social Work, Mangaluru.

Alzheimer’s has no current cure, but treatments for symptoms are available and research continues. Although current Alzheimer’s treatments cannot stop Alzheimer’s from progressing, they can temporarily slow the worsening of dementia symptoms and improve quality of life for those with Alzheimer’s and their caregivers. Today, there is a worldwide effort under way to find better ways to treat the disease, delay its onset, and prevent it from developing. Organizations like MAA play an important role in caring for the elderly with symptoms of Alzheimer’s/Dementia. Being an engineer Jerardin D’souza has come forward to sacrifice his time for a better cause, and he at the helm as founder of MAA is doing a yeoman job. The government can help such organizations, but here are many ways you public can help MAA lead the fight against dementia. From making donations, signing up to one of their fundraising events, volunteering in your local area or getting involved in their campaigning issues, you can surely make a difference. To my friend Jerardin, and MAA there is full support from me, anytime”- U T Khader- State Minister for Health & Family Welfare.

“Palliative Care is an approach which improves patient comfort thus improving the quality of life of not only patients but also their families facing the problem associated with life threatening illness. It affirms life and regards dying as a normal process; Intends neither to hasten or postpone death but definitely adds life to years if not years to life; Offers a support system to help the family cope during patients illness and in their own bereavement; and will enhance quality of life and may positively influence the course of illness. MAA a organization which caters to the needs of patients with Alzheimer’s and Dementia need to be commended for their service.I appreciate the leadership taken by Er Jerardin D’souza in founding MAA and the various useful activities that he has conducted, most importantly, creating awareness of Alzheimer’s Disease and forming a support group. My blessings to every single person who was instrumental in the formation and functioning of MAA, including the media for helping create awareness”- Rev (Dr) Aloysius Paul D’souza-Bishop of Mangaluru.

Mangaluru: Alzheimer’s disease is a growing concern worldwide. The statistics are staggering: According to the World Health Organization [WHO], every four seconds someone is diagnosed with dementia—the leading cause of which is Alzheimer’s. Given its current pace, more than 100 million people will be living with dementia worldwide by 2050—three times today’s figures. Treating and caring for people with dementia currently costs the world more than US$ 604 billion per year and is escalating. Adding to this, current treatments do not halt the disease’s progression—they only address the symptoms. But researchers from around the world are tirelessly searching for a more effective treatment that can actually stop, or even reverse, Alzheimer’s progression.

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Among the fastest-growing and most debilitating diseases, one in eight seniors has Alzheimer’s, making it the most common form of dementia. The disease is the sixth-leading cause of death among all ages in the world. For seniors 65 and older, it’s the fifth-leading cause of death. And with no known cause, cure or prevention, Alzheimer’s has the potential for being one of the greatest challenges faced by the providers of long-term care and personal care-takers. Alzheimer’s, what was once a challenge has become a burden that you can no longer juggle. You need help but don’t want to abandon your elderly loved one. So where do you turn? Who understands your frustration and the problems your faced with? One organization in Mangaluru that can surely help you out to find a solution is MAA, with special interests and care taken by its founder Jerardin D’souza.

Sometimes, taking care of the person with Alzheimer’s Disease makes you feel good because you are providing love and comfort. Other times, it can be overwhelming. Also, each day brings new challenges. You may not even realize how much you have taken on because the changes can happen slowly over a long period of time. This made Jerardin to involve more into activities pertaining to people affected with AD- he makes frequent visits to old-age homes, nursing homes, palliative Care Centers, hospitals etc, and interacts with the AD patients, expresses his love and feelings towards them, thereby bringing joy and smile on their faces.

Born on 7 July 1962, Jerardin is son of Late L C D’Souza- the renowned, brilliant Police Officer, who made a difference to the lives of people whom he came across, with his social commitment, and Evelyn D’Souza- Govt. Officer, actively involved with social service. He has one sister-Joyce Pinto – a Shipping Consultant at Seven Seas Shipping -Mumbai, and three other brothers namely-Joel D’Souza, Bank Consultant / Adviser -Kuwait, Jeevan D’Souza- a entrepreneur and Late Rohan D’Souza, who died of cancer in 2002. After having education at St Aloysius College, Jerardin later did his Engineering Graduate in Mechanical Engineering, B.E., M.I.E., Chartered Engineer, University of Mysore. He was an active Student – Proactive General Secretary of Engg. College.

Jerardin had also done PG Diploma in Construction Management from the reputed National Institute of Construction Management & Research -NICMAR-Pune, and a Course in Journalism too. Founder Member of Karnataka State Christian Minority Development Council [KSCMDC] – with the Chief Minister as Chairman, Jerardin actively involved and reached out to the deserving in utilizing a fund of Rs 120 crores towards-Education, Church repair and maintenance, Micro Finance, Arivu Scheme, Self employment, Women self help, etc. He brought the members together and took leadership in utilizing the funds and interacting with the Government.

The first time that I met Jerardin at a KMC Nava Chaitanya program and that’s where we became “Chums at First Sight”, and I even today cherish our friendship. I admired his hard work and involvement pertaining towards AD patients. I can say that he is a good Samaritan and a hard Social Worker bridging the Gap Between Health Professionals and Families Affected by Alzheimer’s Disease. As the incidence of Alzheimer’s disease climbs along with the nation’s aging population, social workers will likely be increasingly called on to intervene in cases involving this illness . Delivering quality care requires open avenues of communication so that all parties involved can work together toward shared goals. When there are cracks in the foundation, enlisting the help of a social worker can help close up communication gaps and can lead to more positive outcomes. And in that matter, the social service rendered by Jerardin is enormous

In the case of dementia/AD, a social worker’s role as a messenger often stems from a break down in communication on multiple fronts. For one, most individuals with the illness can’t speak for themselves. While people with illnesses such as cancer or diabetes can tell you how they feel—they may ask for medication when in pain or a visit with relatives when feeling lonely—individuals with dementia/AD often can’t, especially as they lose verbal skills and other cognitive abilities as the disease progresses. For many family members, denial, fear, grief, and a lack of knowledge and preparedness about Alzheimer’s disease often impede their ability to ask the right questions or even discuss the issue at all; moreover, when flooded by a tidal wave of emotions or trying to navigate through a swell of everyday responsibilities, they find it challenging to keep their heads above water. And this where Jerardin step in, interacts with the family members of the patients, and arranges the necessary precautions/care that need to be taken concerning AD patients.

I see Jerardin -a founder of MAA and a social worker as a valuable member of a care team, serving as information facilitator, therapist, and assessor. He many a times can help caregivers fully process these dialogues; learn about community programs, appropriate activities, and financial solutions; and provide psychological support. In general, I think professionals rely on social workers to share information that may not be evident to them—to be “the doctor’s eyes and ears of what’s happening in the home/nursing home environment. By broaching complex topics and initiating discussions about possible care strategies, Jerardin guides families and professionals toward improving quality of life for the individual with dementia/AD, as well as for caregivers.

Jerardin plays an critical role in making all the pieces fit when individuals don’t have the cognitive skills or focus to tell their own tales. Families can be tellers of what makes them and, most importantly, their loved ones more comfortable, [such as] what are their favorite foods or what do they enjoy. In such situation, Jerardin help families to take on the role of the protector. He is a skilled listener- he sits down with a family and assess their knowledge, strengths, weaknesses, expectations, and potential support system. He pays attention to details and ask for detailed information such as what the patient was like before the Alzheimer’s diagnosis so as to better understand the person’s life story.

This is the information that can lead to an effective care plan. Many a times Jerardin acts like a counselor which could help family communicate better so that they can support one another rather than create conflict. To sum it up, all I can say is that this “hefty Man” does great service when it comes to taking care of AD/Dementia patients- he truly is a good Samaritan, a hard Social Worker, a Friendly Man, a Respected gentleman, and above all, a great Human Being”. I am feel proud and honored to be his close friend. May God bless Jerardin in all his endeavours and his projects concerning the AD/Dementia patients, and long live Mangalore Alzheimer’s Associationn.

This is what Dr Prabha Adhikari-director of KMC Nava Chaitanya had to say about MAA and Jerardin:

“Although I wanted to do something for Alzheimer’s and Related Disorders MAA founded by Jeradin D Souza gave  me  a platform to iniatiate activities for prevention, early detection and care of patients with Alzheimer’s Disease and related disorders .Since we formed MAA, awareness has been created, more patients are seeking the help of doctors, more care givers are reached out. Media like Mangalorean.com have really played a big role in giving publicity related to not only Alzheimer’s Disease but also to activities of Senior Citizens in Mangalore. Face book created for MAA has been a useful  resource for the educated care givers. Radio Talk by Jeradin D Souza  probable reached those who could not access Face Book. Geriatric Palliative Care Course of Manipal University with MEDIACION Germany led by Dr Jochen Becker, with Contributions from Dr Cordula Dietrich  has really educated a group of doctors and other health care professionals.Twice weekly Brain stimulation activities for mild to moderate dementia patients have been started in KMC Hospital Attavar Nava Chaithanya Hall on Monday  and Thursadays and Spoorthi Charitable Trust on Tuesday and Friday. This may be the beginning of Day Care centres for patients with dementia.

I congratulate Jeradin D Souza, all the Psychaitrists, Neurologists, Psychologists, Psyhciatry Social workers,seniors  and the press who have joined hands with MAA to fight a war against dementia We still have a long way to go. We need hospices for the care of advanced dementia care. We need day care centres and team to deliver home care .We need to have a resource centre. We need to educate people especially seniors to come for memory tests just as they come for BP and sugar tests. We need to Make Mangalore Age friendly and  dementia friendly city”.

The following message from Dr Olinda Pereira-Founder of Vishwas Trust says:

Alzheimer’s is an ailment which in simple language, takes one away from the reality of the present situation. Normally it is associated with forgetfulness. It is not just simple forgetfulness. It is an inability to relate the past to the present. In the final stages one no more recognizes  one’s own family, he or she lives with, mistakenly takes the kitchen  for the toilet or any other such gross discrepancies. Today while Alzheimer’s is spreading fast, we have to find means of avoiding it by keeping the mind active, playing indoor games, solving cross word puzzles and other such, without getting alarmed over forgetfulness of immediate things which comes with ageing. At the same time the past is almost indelibly written in the memory. We must keep our minds active and receptive at all times.

The Alzhemier’s Association in Mangalore has come to stay under the able leadership of the only Geriatric Specialist we have in Mangalore, Dr Prabha Adhikari of the KMC. With the enthusiasm of the Founder Director Jerardin D’Souza the Chartered Engineer, The MAA is moving  ahead. We wish every success and abundant service to the association”.

Following are the excerpts from the exclusive interview with JD:

Q: What made you start Mangalore Alzheimer’s Association- the now popularly known -MAA. Also tell me in brief the existence and activities of MAA.?

Having met a 64 year old American Tourist [Richard Shreder] at a friend’s flat inauguration function, I learnt that he just retired as a Director in an Alzheimer’s facility, back in Seattle, USA. Being socially concerned, I thought of using his experience in handling Alzheimer’s Disease [AD] to the benefit of our local people. Took him to Roshini Nilaya School of Social Work and interacted with the Principal, Gerontologist Dr Audrey Pinto helped in fixing a meeting with the legendary social work Icon, Dr Olinda Periera and other social workers at YMCA.

 

Being a State Council member, when interacting with Violet Periera, proprietor of mangalorean.com, she gave me a contact of Dr Madhusudan Upadhaya, who being a classmate of renowned psychiatrist Dr Ravish Thunga, directed me to him. Richard and myself met him and with Dr Olinda Periera’s help and guidance reached out to Dr Prabha Adhikari and Dr Satish Rao. We went around to meet the Old Age homes, visited Nympha Sadan, had a meeting with the inmates and saw some people whom Richard felt had Alzheimer’s.

With the ground work done, I felt we should reach out to society and arranged a meeting at YMCA Balmatta, and announced in the media with all the reputed participants names and of course Richard Shreder, the keynote speaker. Then, as they say, rest is history. Huge media coverage with my friends at various media firms, and of course mangalorean.com has been like a family member, supporting always. So awareness was created. I am deeply grateful to the media, both, visual and print.

January 13th 2014 was the meeting and launch of MAA and Richard Shreder left India on 17th without seeing the Taj Mahal like President Obama, but very happy, saying he would not exchange his trip for anything else.

Q: How is Richard Shreder involved in MAA?

Richard was the reason why MAA happened. But  as Richard himself tells over and over again, its easy to plant the seed, but not easy to nurture it. Nurturing we do. He is present in spirit, he keeps encouraging and writing. He has plans to come over here shortly and is interacting with the Alzheimer’s Associations back in US, where he has interacted for well over 35 years.

He is overwhelmed by seeing the work of MAA now.. So, he played the lead role of being there. But, he was a tourist, who was thrilled by what happened, He never expected the publicity and awareness that was created. He was stunned and still is. He carried various newspapers which had his color photo to show his people back home. Since AD is more known in US, we used his experience and of course, the a foreigner being here helped in creating more news and awareness. Richard was a very humble, genuinely caring and loving individual. I and MAA share a loving relationship with him. He writes encouraging mails. We will use his expertise when we build Special Facilities for Alzheimer’s affected.

Q: How has the public supported in the activities and Growth of MAA?

The main point was creating awareness in this less understood disease. There were families locking their AD affected members at home. There was the social stigma attached too, as its a ”MENTAL” disease. Our Support Group -MAA- has tried to reach out and has made the word “ALZHEIMER’S” heard and understood.

The World Alzheimer’s Day was productively observed in association with KMC Attavar. Care Givers meet and information was shared.The Public support has been huge, but getting them to KNOW about it is a herculean task.

Dr Prabha Adhikari, was proactive in inviting me to KMC and making members from KMC Nava Chaitanya on the Republic Day 2014.It was a very humbling experience and to see our Elders at KMC was a very moving experience. I also met Alfie, of mangalorean.com who has been invaluable in supporting the movement. With Richard we had visited many families who had AD sufferers and had counseled their families in care giving. Today care giving is a big concern. Dr Prabha Adhikari is taking initiatives in that direction.

Q: What do you expect from the public as support and contribution towards MAA?

There is nothing I expect from the public, because I feel I am the public. It was just a chance meeting that led to all this and the support that has been created is truly overwhelming. Specially from families that have suffered this Traumatic, less understood terminal disease. Of course there is a need for a special Facility for the later stage Alzheimer’s patients, we need land, we need a specially designed building, above all we need people willing to serve. In its time, I know it will happen, the way MAA has evolved, all needs of MAA also will be met. Simply because its not my MAA alone, its every one’s MAA. I appeal to everyone to realize the implication of this AD, where you lose your very own, when ALIVE.

Q: What kind of role you play in the operation of MAA?

Like I said when  RJ Roshan of Sarang Radio FM 107.8 FM, introduced me as Founder Director MAA etc, that I am the ‘Pradhaan Sevak’ of MAA., If our PM describes himself so, then ours is only a Service Organization. Yes the Psychiatrists, Neurologists like Dr Ravish Thunga, Dr Shivanand Pai refer the family members of AD affected to meet me. I share their feelings and provide guidance in meeting the proper professionals, be it social workers, care givers or doctors. There is comfort feeling for us both.

Of course there are Care Givers Meets at various places, specially KMC Attavar, where Dr Keshav Pai, HOD, Psychiatry, Mariella D’Souza, Seemanthini counsel and guide the care givers. There are awareness meetings at Rotary, Lions Club meets, along with Dr Prabha Adhikari.

The awareness campaign through the various media, Print [newspapers], Visual like TV news, Internet, etc. There is a popular Facebook MAA page, which is uploaded with all MAA activities and interactions with international Medical Advisers. Posting of the latest developments on the Page. We request everyone to Please LIKE the MAA page on Facebook and Help create awareness and join the MAA Movement. I interact with hospital heads, Deans, HOD, International consultants like Dr.Becker, Germany. The first Palliative Care Course in Geriatrics at KMC, I got myself certified along with MD doctors. Meet the leaders, both political as well as religious, Ministers, Bishop, Swamis and interact and inform them. Conducted the Landmark “Panel Discussion on Alzheimer’s Disease’ with support from Five Seniors organizations.

I did an online Course from Tasmania University on “Understanding Dementia” which helped me explain to people who called in on the “Phone In” One hour Programme on RADIO SARANG. There are too many activities in building an Organization, but I am happy that everyone has sincerely supported in making MAA what it is, in just a years time. I am hugely appreciative and acknowledge the fact, but thanking looks superficial, because they have done it for goodness sake.

MAA has plans to train care givers with guidance from Helpage India. School drop outs or with little education, care giving skills need to be taught.It is not an easy job.The temperament has to be tuned. This is a big need., since without special training  AD care is difficult. Vishwas Trust, MASCA, Sahaaya, Age Mangalore, and MAA organised a very useful ‘AD Panel Discussion’ at Bishop Jathanna Auditorium in June. This was a huge service. All professionals gave insight into AD, with a big gathering. Recording is available on MAA page on Facebook. Huge response from world over.

MAA receives calls from people world over. Family members consult for care giving needs to professional needs. Psychiatrists, Dr. Ravish Thunga, Neurologist Dr. Shivanand Pai, refer their patients to MAA. We provide a soothing touch, encourage the family, guide them, they generally feel very comforted. Specially children living abroad. Most of them follow our MAA page . We have international Adviser Dr Anuj Bhatnagar, a Fellow at Johns Hopkins, Baltimore, USA, who regularly writes and counsels .

I should say the whole of Mangalore is supportive. Major Hospitals like KMC, Fr Mullers have been very supportive and there are plans to have nodal points in all hospitals. Our helpline is well publicized & we receive calls and guide them. In fact we have a consortium of organizations which supports the noble cause.

Met the Health Minister UT Khader, a dear friend, who has assured all help in any way they can. We are going to form a board of directors for MAA and chalk out future plans. There has been a great sense of support but we have not touched any money. All what we have spent is our own resources, but, with advanced stage AD patients, we need special facilities & we will build the state of the art advanced facility on par with international standards. Richard is always willing to be a part of it.

Q: What is your message to the readers of mangalorean.com ?

“My Life is my message” said the Mahatma, well, If a person like me, who had no background in this field could try to make a difference, I feel everyone can show a little sensitivity and do their bit. Now I get glimpses of the term ”In giving you receive” though I have done nothing at all, maybe a little ‘belling the cat’ activity by trying to create awareness and used the Social media, Facebook etc, to good effect.

It is only when you see your own, parent or relative suffer AD that you realize the futility of it all. Once you fail to recognize your very own, then Life really stares you in your face. Place yourself there & you will want to do something. It really tries you as a human being. I want everyone to just think that you forget who you are and imagine your life. Empathy, will make you know the essence of AD. Your best self arises. Unconditional LOVE only can serve AD.

I remember a husband who was in a hurry telling that he has to rush to have breakfast with his wife- ”Is she waiting for you? ”asks the listener” No, She doesn’t even know who I am, she has Alzheimer’s” says the husband. ”Then why are you in a hurry” says the listener. ”BUT I know who she is..!!” says the husband and rushes away.

This my dears, is pure, simple ,unadulterated LOVE. Every new challenge can be faced with Love, & Care surely follows. I appeal to all well wishers, to share their Time and Money to make their MAA truly reach out to the Alzheimer’s Affected. Come Build a Facility..You can reach me at anytime, just dial: 98440-74759

Since Jeradin D’Souza has always been attending various seminars, meetings, training courses etc regarding AD/Dementia diseases I asked him the following questions, which he got clarified/received more information from the professionals/doctors and was able to provide the answers :

Q :What should one do if they come across their loved ones suffering from Alzheimer’s?

If a loved one recently received a diagnosis of Alzheimer’s disease, there are some steps you can take to help manage some of the stress and worry that you might be experiencing. First educate yourself- Learn as much as you can about the disease so you will know how you can help. Learn about the progression, symptoms and stages of the disease process and behaviors common in each of the stages. Your doctor can provide this information, and an overview of it can also be found online on the Alzheimer’s Association Website.

Utilize resources- The doctor will be able to tell you where your loved one is in the course of the disease and what to expect in the future. He or she will also be able to tell you what treatments are available to alleviate symptoms and address challenging behaviors. Ask your doctor and/or contact your local chapter of the Alzheimer’s Association to see if there are other resources in your local community, such as support groups, in which you can learn more and find support from others who are caring for loved ones with Alzheimer’s.

Seek support -When you are supporting someone with Alzheimer’s, you need someone to talk to and support you. Consider attending a local support group or participating in an online support group. In addition to being able to share your feelings and concerns with others who are in similar situations, these groups often provide helpful ideas and resources that have been utilized by others caring for someone with Alzheimer’s.

Take time for yourself – You will most likely observe and experience changes in your loved one’s personality. These changes can affect your relationship with him or her as well as with other family members and friends. Caring for someone with Alzheimer’s requires both physical and emotional stamina. In order to be a caregiver to another person, you must take care of yourself.

Plan for the future -Prepare financial and legal documents and investigate long-term care options including adult day services and respite services. The most effective caregiver is well informed, prepared and asks for help and support from resources that are available.

Q: What side affects appear with Alzheimer’s disease?

There are so many ways the disease impacts us. Not only does it begin by robbing us of memory, but it changes the way we interact socially, it robs us of our peers and our networks, it removes us from our families, it isolates us from our communities, our social networks, our jobs, and it really destroys just about every way we interact in the world around us. So, there is a high rate of depression. People who have not yet been diagnosed often have the emergence of depressive symptoms prior to the diagnosis. And we don’t believe the depression is a cause of the disease, but really a symptom that starts to present first. Then, as the disease progresses, about 50 percent of people who have Alzheimer’s disease will have three behavioral symptoms, and 90 percent will have one behavioral symptom. As the brain changes, it does change how we function and how we behave and how we feel emotionally. And that’s only for the individual. This doesn’t even include all the emotional and social impacts of family and friends and the community around them.

Q: What are some behaviors that family members and caregivers can expect?

There are a lot of behavioral and psychological symptoms that accompany dementia. Irritability, sadness, withdrawal…and one of the common characteristics of the disease is apathy, this loss of expression of emotion, which is not actually depression. Behaviorally, we can see a lot of other changes. People can become suspicious or paranoid, and a lot of that’s driven by the loss of memory. As more changes occur, our ability to use our reasoning and judgment to make rational decisions gets worse. We often will see personality changes that have never been present before. People react to scenarios far different than they ever have, which is not only hard for the family members as well as the patient, but also for those who care for them.

Because it is a disease that progresses generally slower than a lot of other diseases, the initial symptoms are very subtle. What’s important to remember is that when memory deficits start to appear, they aren’t intentional. But in people’s attempts to respond to those memory losses, they will often get mad or try to be more forceful when making their point. There’s a high degree of frustration amongst the individual with the disease and others around them. And the hard part is to be able to step away and say that this isn’t done on purpose. It’s physically being removed from their abilities. And so early on, it’s gaining an understanding of what that person can and can’t do and actually realizing they can’t stop this. We have to increasingly become aware and start to make decisions that promote their safety, even at the risk of trumping their autonomy. And trying to create an environment where they can live and interact in is always important.

Q: Why is the number of Alzheimer’s cases rising?

We’ve seen people who previously used to die of other diseases now survive heart attacks or survive other chronic diseases and live long enough to really see the emergence of Alzheimer’s disease. There are a lot of questions as to what other factors are contributing to the disease. We aren’t seeing any obvious data that says that, statistically, we have more cases of Alzheimer’s disease now than we did in the past, so we don’t believe there’s something in our environment that’s causing it. But we know that as we get older, our risk factor really climbs. From age 65 to age 85, the rate practically doubles every five years.

Q: What do you suggest to help family members with stress and caring for a loved one with Alzheimer’s?

As a Founder of MAA, I have associated with various doctors who deal with Alzheimer’s patients; attended many seminars/workshops on Alzheimer topics; worked with palliative Care centers and similar organizations. I have received lot of help, gained lots of knowledge and information. Information is probably the best thing, because once we all know what we’re dealing with, then we can have a discussion about how to intervene. Find a professional to talk to. Get a good diagnosis to really understand what the pattern of change is, because we have to differentiate Alzheimer’s disease from other dementia’s.

Q: Why is early detection important?

We need to become aware of how to help that person and provide a care plan that’s appropriate for that person and their family, as well as have these discussions up front, so we know what to expect and we know what the person wants in the long term. Have a support network, because it’s very easy to become isolated and believe there’s no help at all. Caregivers and patients become a bit removed from society, particularly as their care needs increase. We really advocate for assistance and support networks, wherever they may be.

Q: What treatments are there, and what do they do?

We’ve got just a small handful of medications that really are designed to slow the symptoms of memory decline down. Usually, they plateau the decline for about a year. They promote activity, but don’t alter the course of the disease or the changes that are going on in the brain.

Q: What’s on the horizon for prevention, treatment or a cure?

The long-term goal is to find a way to prevent the disease, to intervene before it manifests. There are research trials going on to remove some of the changes that occur in Alzheimer’s disease — these plaques that get deposited in the brain — and using antibodies to remove those plaques. We have limited amounts of data on their full effect, but some studies offer some hope and encouragement that they may work in addition to the medications. But none to this point have really given us a lot of overwhelming evidence to say they’re halting the disease course, which is what we’d hoped for. We’re starting to see the first attempts to actually intervene or alter what’s going on in the brain, not just respond to the loss of cellular function in the brain, and that’s where the future of the research is going.

Q: What can people do to improve brain health and maintain function?

Anything and everything in moderation. Exercise has been proven to help the vascular health of the brain and promote blood flow. Learning new tasks, rehearsing information, and cognitive exercises are always important in maintaining our associations to all of our different stored memories. The degree of redundancy helps minimize symptoms of emergence of disease or cognitive change. Maintain an active, healthy lifestyle. Controlling vascular risk factors — anything that contributes to heart disease — will benefit us in multiple ways, not just our heart health, but our brain health, too.

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