Treatment of CVS in Adults

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Developing Formal Guidelines for the Diagnosis and Treatment of CVS in Adults

When CVSA  was founded in 1993, it was thought that CVS was a condition of childhood and adolescence. Now we know that adults also suffer from CVS. There is CVS that begins in childhood and may extend into adulthood and adult onset CVS. As so many adults can attest, the condition causes untold suffering and disability, and often leads to family, school, and career upheaval.

Ashley's Voice

Doctor showing tablet to her patient in hospital room

With children’s guidelines already in place thanks to CVSA fundraising and our strong medical team, we are embarking on a partnership project that will help adult sufferers around the world. Partnering with the American Neurogastroenterology and Motility Society (ANMS) www.motilitysociety.org, a strong medical committee of ten medical professionals has been formed to develop guidelines for the diagnosis and treatment of CVS in adults. When completed, these guidelines will help doctors and ER personnel around the world understand how to diagnose and treat adult CVS patients more effectively.

Developing medical guidelines is a rigorous and expensive process, estimated to take two years. This is where you come in. CVSA is actively seeking financial sponsorship for this project through our membership and beyond. You can be part of this long overdue work of CVSA, the product of which will reach people still suffering in isolation with CVS. Please consider sending in a donation through our website.

© Cyclic Vomiting Syndrome Association (CVSA) • P.O. Box 270341, Milwaukee, WI 53227 • Tel: 414-342-7880
cvsa@cvsaonline.org

Funeral Decisions

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Making Funeral Decisions

The Right Funeral Choices are hard to Make

When a loved one dies, there are plenty of decisions that will have to be made by his or her family. A potentially overwhelming number, in fact. It is a sad fact of the nursing profession that one of the most dreaded duties that a caretaker will have to perform is to ask the following question: “Which funeral home would you like us to call to make arrangements for the body?” That question carries with it a ton (actually several tons) of stress and grief that can come pouring upon a family member who has lost his or her beloved. And it just the first of a string of important decisions that must be made – often within a half hour or less. This article aims to help families be ready for that question and all the others that will follow it over the course of the next few days (or even weeks).

The easy way to make Funeral Decisions:

The best and easiest way to make funeral decisions is to take the time to plan things well in advance. Experts in a variety of fields — from psychology to financial planning to, of course, funeral planning — will all tell you that elders in a family owe it to their own piece of mind (as well of that of their loved ones) to make sure their final arrangements are planned, down to the very last detail and very last dollar, well before the time of need. And the experts all go on to say that it’s never too early to make these arrangements. Though people in their 20s rarely can be found to consider, and communicate, what should happen to their remains in the event of an untimely death, doing so can be a healthy experience. It is a practice of good stewardship to write one’s wishes and plans in detail and store the document in a very secure place known to several in the family. The very first sentence of this document would do well to answer the question that no nurse will ask out of eagerness: which funeral home should we call.

How to Decide who should make the Funeral Decisions:

But, even in the case in which a funeral has been planned in advance of need, there will still be at least a few details left uncovered. The deceased may have thoroughly explained his or her desire to be cremated or burried, or what to do with the cremation ashes, to scattering the ashes across various part of the state in which he lived or to have a water or ocean ash scattering. But, at the same time, she might have likely neglected to say which exactly which relatives should be mentioned by name in the obituary, or who should be asked to be a pall bearer at the open casket service he requested.

The questions, nevertheless, must be answered by someone.

The best way to do this is to organize an emergency family meeting (via telephone or video conference call, if need be) within 12-24 hours after a death. Whoever takes the lead in arranging the meeting should be prepared to also be selected the family’s spokesperson in dealing with the professionals who will be helping plan the funeral. But this person should not presume this selection in advance of the meeting. The most important item of business in this meeting would be to achieve a consensus about just who has the authority to speak for the family. In most cases, this authority need not necessarily be in writing, but, in the event a family has a history of litigiousness or even just a history of fairly routine strife, it might not be a bad idea to ask all present to sign a statement of some sort. A simple one or two sentence page will probably suffice in all but the most contentious of cases.

Establishing a Consensus:

Selecting a person to be the spokesperson for a family can greatly help in handing arrangmentsOnce a spokesperson has been selected, it then becomes his or her responsibility to be a democratic leader, taking all opinions and ideas into consideration before making any final decision. It is important for this leader to remember that his or her selection is not necessarily a license to plan things his way. Such an attitude could be detrimental to the long term healing of grief for many family members who have entrusted him or her to speak for them.

Consensus must always be the goal.

What to do in the event of Major Disagreements:

In the event of major disagreements over how to make funeral decisions for a loved one, the leader who has been selected as spokesperson for the family should consider adopting a humble spirit for the sake of harmony and consensus. That’s what any good leader would do, in fact.

A case in point:

One woman in Texas was selected as the family spokesperson after the death of her husband who had left conflicting instructions regarding his choice of burial versus cremation. Being a frugal woman, the wife’s first inclination was to simply have her husband quickly cremated and ask various family members to scatter portions of them over various parts of the United States in the coming months. This had been the wish of her recently departed brother-in-law, and her husband had always seemed glad for the opportunity to participate in that type of memorial. And besides, this decision was going to save thousands of dollars off the cost of her husband’s memorial service, a ceremony that, it was clear, she would be paying for almost entirely.

Families often have to make hard personal decisions in planning funeralsWhen the woman mentioned these plans to family members, she immediately began to sense that several were uncomfortable with it. For emotional reasons, these family members gradually expressed to her over the next day or so that they preferred to have their beloved relative buried in a traditional grave marked with a headstone that they could come and visit many times over the course of the rest of their lives.

The woman knew that honoring these desires would add thousands of dollars to her expenses, and it went against her spirit of economy and frugality.

But she conceded anyway.

Allowing this emotional blessing to her fellow family members who loved her husband as much as she did was simply the right thing to do, she decided.

Consensus, in the end, was worth much more than frugality. And that is often the case, families find, when they get down to the business of making funeral decisions.

Need help? Email us Info@AshleysVoice.Com

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Ashley’s Voice
Ashley McCaskill Zellars
http://AshleysVoice.com

 

Is Anger One of the Stages of Grief?

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Is Anger One of the Stages of Grief?

Ashley's Voice

You may find yourself feeling angry:Legend has it that one evening an elderly Cherokee told his grandson about a battle that goes on inside every one of us. The battle, he said, is between two wolves. One is Evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority and ego. The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith. His grandson thought about this for a moment, then asked his grandfather, “Which wolf wins?” His grandfather simply replied, “The one you feed.”
Although anger is commonly identified as one of the so-called Stages of Grief, we now recognize that grief does not occur in easily defined stages, and anger is not always a part of everyone’s experience. Better to think of anger as a state (the circumstances or condition in which you may find yourself at any given time) rather than a stage (one of several sequential phases you may be in, as you work your way toward an end).
What is more, many mourners report not feeling angry at all. Nevertheless, there are times in your grief journey when you’re frustrated and hurting, and it’s only natural to lash out and look for someone to blame. Being angry is a way of channeling energy, of making some sense of the pain. When you are protesting an unjust loss, you may have every right to be angry. Even if you know your anger isn’t logical or justified, you can’t always help how you feel. Emotions aren’t always rational and logical. Feelings are neither right or wrong, good or bad. They just are. And for some of us, being angry may be preferable to feeling the underlying hurt and pain of loss.

  • at yourself for what you did or failed to do, whether it is real or imagined.
  • at your loved one for dying and abandoning you.
  • at a surviving family member for not being the one who died.
  • at medical or nursing staff who expressed little or no sympathy during your loved one’s illness or death.
  • at the doctors or the health care system for failing to save your loved one.
  • at the situation which suddenly rendered you helpless and powerless, when all this time you thought you were in control of your life.
  • at fate or at God for letting your loved one get sick and die.
  • at life because it isn’t fair.
  • at the rest of the world because life goes on as if nothing’s happened, while all your dreams are shattered and your life’s been turned upside down.
  • at others who have not lost what you have lost, who aren’t suffering; who are more fortunate than you and don’t even see it or appreciate it; who cannot understand what you are going through; who will go back to their lives as usual.
  • at others for being happy (part of a couple, part of an intact family) when you are not.

Anger is a powerful emotion that can be frightening. But feeling angry doesn’t necessarily imply that you will lose control or take your anger out unfairly on others. Before you can get through it, let go of the intense emotions attached to it and move on, your anger must be admitted, felt and expressed, if only to yourself. When you simply acknowledge feelings of anger to yourself or a trusted other without actually doing anything about them, no harm is done, to you or anyone else. On the other hand, if anger is suppressed and held on to, eventually you may erupt like a volcano, internalize it and take it out on yourself (in the form of depression or anxiety), or misdirect it toward innocent others such as family, friends and colleagues.

Suggestions for Coping with Anger

  • Recognize what you were taught about anger as a child and how that may affect the way you experience and deal with anger now.
  • Seek to understand what’s driving your anger, resentment or disappointment. Examine whatever expectations you had of others that were not met. What did you expect that did not happen? Were your expectations reasonable? Were others capable of doing what you expected?
  • Discover ways to discharge the energy of anger in appropriate, non-destructive ways that will bring no harm to yourself, to others or to property. Find a safe place, space, activity and time where you can let your anger out through:
    • physical exercise: sports, brisk walking, pounding pillows, chopping wood, digging holes, scrubbing floors.
    • hobbies and crafts: painting, pottery, stitchery, wood working.
    • music: blowing a horn; pounding drums or a piano.
    • writing: keeping a journal; writing a letter and tearing it up.
    • talking: finding someone you can talk to, without feeling judged or being told you’re bad because you’re angry.
    • reaching out: asking others for the support you need, rather than expecting them to know.
  • If you’ve decided your anger with another is justified, you can choose to deal with it by
    • confronting the person constructively with what happened and how you feel about it.
    • realigning your expectations, accepting the person’s limitations and seeking the support you need elsewhere.
    • leaving the relationship.
  • If you think you’re in danger of hurting yourself or someone else, if you’re feeling as if your anger is out of control, seek professional help at once.
  • Remember the wise words of Mark Twain: Anger is an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured.

Your feedback is welcome! Please feel free to leave a comment or a question, or share a tip, a related article or a resource of your own in the Comments section below.

Grief and the Burden of Guilt

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Grief and the Burden of Guilt

Guilt is perhaps the most painful companion of death. ~ Coco Chanel 

Guilt is a normal response to the perception that we’ve somehow failed in our duties and obligations or that we’ve done something wrong. It generates a jumbled mixture of feelings including doubt, shame, inadequacy, insecurity, failure, unworthiness, self judgment and blame, anxiety and fear of punishment.

 When your loved one’s terminal illness was finally diagnosed, as a caregiver you may feel guilty that you hadn’t noticed symptoms sooner, waited too long to seek treatment or didn’t do enough to comfort your beloved. If death came suddenly or unexpectedly, you may feel guilty for not being present when it happened. If it came after a long, lingering illness, you may feel guilty for feeling relieved that your loved one’s suffering is over and you’re now free from the burden of worry and care. You may feel guilty that you are the one who survived, or uncomfortable that you received an insurance settlement or inheritance following the death of your loved one. If you’re a religious person, you may feel guilty that you feel so angry at God.

Unfortunately, guilt is a natural and common component of grief. When someone you love dies, it’s only human to search for an explanation, to look at what you did or did not do, to dwell on the what if’s and if only’s. You agonize and tell yourself, “If only I’d done something differently, this never would’ve happened.” Sometimes, though, there simply isn’t anything you could have done differently. When your loved one’s illness or death occurred, chances are that whatever happened beforehand was not intentional on your part. In the wise words of internationally known author and publisher Louise Hay, we do the best we can with our understanding at the time, and when we know better, we do better. Given the stress you were under at the time and how exhausted you may have been, you were doing the best you could. You were basing whatever you did on what you knew, given the information available to you then.

Harsh as it may seem, consider that even if you had done things differently, your loved one still could have died in some other way at some other time! Sometimes we act as if we can control the random hazards of existence, even when we know that death is a fact of life.

Guilt is driven by our own personal beliefs and expectations, and dealing with it requires that we examine what we think we did wrong, face it and evaluate it as objectively as possible. For example, what did you expect of yourself that you did not live up to? Were your expectations unrealistic? If they were, then you need to let go of them. Since you did all that you were capable of doing at the time, there simply is no basis for your guilt, and you need to let go of that as well.

Nevertheless, if after careful examination of the facts, you find that your expectations of yourself are legitimate and you still did not live up to them, it’s important to face and take responsibility for what you believe you could have done differently. Healthy guilt allows us to own up to and learn from our mistakes. It gives us a chance to make amends, to do things differently next time, to come to a better understanding of ourselves, to forgive ourselves and move on.

Tips for Coping with Guilt

Identify what it is that you feel guilty about. Resist the urge to keep such thoughts and feelings to yourself like so many deep, dark secrets. Bring them out into the open where they can be examined. Share them with a trusted friend or counselor, who can view your thoughts and feelings more objectively, and challenge what may be irrational or illogical.

Listen to the messages you give yourself (the should haves, could haves and if only’s), and realize the past is something you can do absolutely nothing about.

When guilty thoughts come to mind, disrupt them by telling yourself to stop thinking such thoughts. Say “STOP!” firmly, and out loud if you need to.

Live the next day or next week of your life as if you were guilt-free, knowing you can return to your guilt feelings any time you wish. Pick a start time, and stop yourself whenever you make any guilt-related statements.

Write down your guilt-related statements, set a date, and pledge that from that day forward, you won’t say them to yourself anymore. Post them and read them every day.

If you are troubled by feeling relieved that your loved one’s suffering has ended, know that a heavy burden has been lifted from your shoulders; you have been released from an emotionally exhausting and physically draining experience, and to feel relieved is certainly understandable.

If you believe in God or a higher power, consider what He or She has to say about forgiveness.

Participate in a support group — it’s a powerful way to obtain forgiveness and absolution from others.

Be your own best friend. What would you have said to your best friend if this had happened to that person? Can you say the same to yourself?

∙ Remember the good things you did in your relationship with your loved oneand all the loving care you gave. Focus on the positive aspects: what you learned from each other, what you did together that brought you joy, laughter and excitement. Write those things down, hold onto them and read them whenever you need to.

Ask what you expected of yourself that you didn’t live up to. How is it that you didn’t? What were the circumstances at the time? What have you learned from this that you’ll do differently next time?

What can you do to make amends? Find a way to genuinely apologize to your loved one’s spirit and ask for forgiveness.

Have a visit with your loved one. Say aloud or in your mind whatever you didn’t get to say while your loved one was still living. Be as honest as you can be.

Have your loved one write a letter to you. What would this person say to you about the guilt and sadness you’ve been carrying around?

Ask what it would take for you to forgive yourself. Can you begin doing it? Say out loud to yourself, “I forgive you.” Say it several times a day.

Remember that no one else can absolve your feelings of guilt—only you can do so, through the process of intentionally forgiving yourself.

When you’ve consciously learned all you can learn from this situation, and when you’ve made any amends you consider necessary, then it’s time to let go of your guilt, to forgive yourself, and to move on.

Channel the energy of your guilt into a worthwhile project. Do good deeds in your loved one’s honor.

Being A Caregiver – Esophageal Cancer

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Being A Caregiver – S. Oxford Brentwood TN

It was the most honorable and fulfilling thing I’ve ever done. It also was the absolute hardest thing I’ve ever done.

My best friend and bandmate, Brian was diagnosed with esophageal cancer in June ’11. He’d had difficulty swallowing for 18 months or so and it was progressively getting worse. The tumor was near the top of his esophagus and at the time of discovery blocked about 75% of the passageway. It was deemed too large to surgically remove initially and radiation and chemotherapy were ordered to shrink it then we’d talk about surgery. First thing done was to put in the chemo port on his chest on the left side and a feeding tube through his abdomen since swallowing was so difficult. These two procedures were done at the same time. One night in the hospital and that was it.

Brain

Brian had no family here and was adamant they not be notified. He felt they had their own lives to live and didn’t have time/couldn’t afford to take the time off to come help and I said “I can handle it”..

Radiation was daily Monday thru Friday (except holidays) for 5 weeks. Each radiation treatment lasted about 45 minutes.  Chemo was every three weeks and it took upwards of 6 hours per treatment. Chemo was set up first on a Thursday and Radiation started the following Monday. The first course of these two treatments was to last 6 weeks – radiation for 5 weeks and three chemo drips. Then he’d get a month off to recoup.. I went with Brian to the first session of each then the following treatments and the rest of this course, he drove himself there and back. On chemo days I’d go over and stay with his dog but otherwise I’d call or pop over in the afternoon each day to check on him. The chemo started kicking his ass the Saturday after his 2nd drip. Nausea, the squirts, fatigue, no appetite.. It would last til Tuesday or Wednesday then he’d feel pretty ok for two weeks.. The radiation didn’t seem to affect him adversely until that first “off” period. Hair said bye bye, fatigue became a monster and his throat was on fire..

After that 3rd round of chemo and 5 weeks of radiation he was on treatment vacation. A week into that it became apparent I was needed full time so I packed up some clothes and toothbrush and moved in.. He was miserable. Needed help getting out of bed, getting to the bathroom.. He came to detest “eating” Ensure thru a tube into his stomach.. By this time a few close friends realized something was up but they were sworn to secrecy.. One of those in particular stepped up often to spell me for an afternoon and give Brian someone else to talk to, too..

It was wearing me down.. I can see that now, but I couldn’t then.. I was too focused on Brian. Sorting medical bills and insurance claims and managing medication (there was a LOT) and trying to get him to smile and feel better. I had tunnel vision.

That month was good for Brian. He felt pretty tolerable the last three weeks or so and his spirits was up..

After that “off” period of 4 weeks xrays were taken, measurements done. The tumor was shrinking as it was hoped but still too large for surgery. So, round two was ordered. Same radiation schedule and same Chemo schedule but with different chemicals.. The 1st chemo drip laid him out. Energy immediately sapped and he wasn’t able to drive himself now.. This round of treatment was identical to the first except I was driving and he had few if any “good” days.

Now it is November and round two is done. There was a little more shrinkage of the tumor but still not enough. To remove it and be sure they didn’t miss anything his voice box, part of his trachea and the flapper thing that closes off the trachea to keep liquids and food from entering the lungs would have to be removed. The risk of aspirating something into the lungs was high to say the least. Pneumonia would set in and in his condition he couldn’t fight it, it was thought.. Two surgeons from Vanderbilt Hospital as well as one from the Mayo clinic were consulted. All advised against surgery. As a matter of fact, two said they simply wouldn’t do it. So, back to oncology we go and we’re told they threw the best stuff they had at it in round two and asked if Brian would like to participate in a trial. It looked promising and, given, it was do the trial or do nothing but wait, Brian elected the trial. It was after the first of the year before that started – talk about paperwork JEEZ… More xrays and measurements done to establish the baseline for his part of the trial. The tests revealed the cancer had spread to his liver, lungs and bones.

This trial round would have no radiation component. It was chemo only and was scheduled for every two weeks. He started the second week of Jan and he rallied! It was amazing! He felt good.. Well, not good like you and I know but good for someone fighting cancer.. It was short lived though and when that feeling began to fade it faded fast! Plummeted is a better word. He was in a wheelchair by the 1st of Feb. On his 4th treatment of the trial chemo – mid March – he was too weak. The trial was ended. That was a Thursday. Appointment set with main oncologist for the following Thursday..

Brian’s brothers had been emailing and calling and at first he’d write back saying all was well and he phone was buggy that was why he wasn’t answering.. The Monday of the week we were to see the Oncologist one of his brothers wrote to me.. I could keep the secret a secret no longer. I spilled all the beans. Brian was dying right before my eyes. He was sleeping 18 hrs a day now. His brother arrived at 9 pm that Wednesday and Brian was already in bed. I hadn’t told him I’d told his brother who was sleeping in the next room.. That Thursday morning I woke Brian as usual and as I was helping him up to the chair to the pot and to get dressed for the doc appt, I told him that Tommy was there.. He smiled and said “thank you”. He saw my relief cuz I guess it was obvious.. He was happy to see his brother and I think it lifted his spirits..

When we saw the Doc he was shocked at how far Brian had slid.. Hospice was ordered. They came Friday.. Another brother arrived Saturday. And another Sunday. I stayed. I was happy to have the help and and was so very protective of Brian at the same time, I think I pissed off a couple of the brothers.. Sunday March 19th 2011 was an unusually warm day and we were all outside on the screened in porch, Brian included.. Was was not able to talk above a whisper but he talked and the brothers bonded.. It was beautiful.. About 5 pm we went back in and Brian settled into his favorite chair and dozed off.. He didn’t wake up again.. About 7pm, while Tommy & I was in the room watching tv, we heard Brian say, “home? This is home?” Tommy and I both said, “yeah, this is home” and he said “ahhh ok…” and kinda smiled.. at 12:02am March 20th, he took a big inhale of a breath. Head went back, eyes opened a bit and there was no visible or audible exhale and he was gone.. I think he left his body at 7 when he asked “this is home?” and his body lived on another 5 hours..

I had no idea of the effect it would have on me and I still don’t think it’s done… I had 3 months to process the last 9 months of Brian’s life, which passed like a blur, when my Mom was diagnosed with the big C.. She lived 6 months before dying at home. The treatment for her was chemo only. I had plenty of help with Mom. I, having just gone thru it, was considered the expert.

My Dad and Sister were the primary caregivers for Mom and I found myself looking after them more than anything.. Caregivers need care too.. I’ll say that again, caregivers need care too.. I wish I had some advise on how to prepare for that role in life. I could say “ be sure to take time for yourself too” but I know from experience, I could not take my own advise. Nothing else in my life mattered. I was laser focused on taking as much stress off those going through the horrors of cancer treatment as I could. Nothing else mattered.

S. Oxford – Friend of Ashley’s Voice

Difference Between Alzheimer’s and Dementia

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Please be an advocate for other caregivers that are assisting loved ones with Alzheimer’s or Dementia. Add your comments to this post or let us connect to your posts.

Alzheimer’s disease and dementia are often used interchangeably as many people believe  that one means the other. In fact, the distinction between the two diseases often causes confusion on the behalf of patients, families and caregivers. Discover how the two diagnoses, while related, are remarkably different.
What Is The Difference Between Alzheimer’s and Dementia?

Alzheimer’s and dementia are still a mystery in many ways. This is why the two similar diseases are often mixed up in every day conversation and understanding. According to the National Institute on Aging (NIA), Dementia is a brain disorder that affects communication and performance of daily activities and Alzheimer’s disease is a form of dementia that specifically affects parts of the brain that control thought, memory and language.

Read on to discover more particulars on how the two diseases vary and why there’s still a lot of scientific research needed—as well as public awareness—around these world-wide epidemics.

What is dementia?

Dementia is an umbrella term for a set of symptoms including impaired thinking and memory. It is a term that is often associated with the cognitive decline of aging. However, issues other than Alzheimer’s can cause dementia. Other common causes of dementia are Huntington’s Disease, Parkinson’s Disease and Creutzfeldt-Jakob disease.

What is Alzheimer’s Disease?

According to the Center for Disease Control, Alzheimer’s disease is a common cause of dementia causing as many as 50 to 70% of all dementia cases. In fact, Alzheimer’s is a very specific form of dementia. Symptoms of Alzheimer’s include impaired thought, impaired speech, and confusion. Doctors use a variety of screenings to determine the cause of dementia including blood tests, mental status evaluations and brain scans.

How Are They Different?

When a person is diagnosed with dementia, they are being diagnosed with a set of symptoms. This is similar to someone who has a sore throat. Their throat is sore but it is not known what is causing that particular symptom. It could be allergies, strep throat, or a common cold. Similarly, when someone has dementia they are experiencing symptoms without being told what is causing those symptoms.

Another major difference between the two is that Alzheimer’s is not a reversible disease. It is degenerative and incurable at this time. Some forms of dementia, such as a drug interaction or a vitamin deficiency, are actually reversible or temporary.

Once a cause of dementia is found appropriate treatment and counseling can begin. Until a proper diagnosis is made, the best approach to any dementia is engagement, communication and loving care.

The Need for More Public Awareness and Research Funding

While the differences between Alzheimer’s disease and dementia are clear to families dealing with the diseases, more public awareness is needed to differentiate between the two. Further understanding of what exactly causes Alzheimer’s disease will help to clear any confusion and hopefully lead to better treatments plans and, ultimately, a cure.

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