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Daily Care Plan

Daily routines can be helpful for both you — the caregiver — and the person living with Alzheimer’s. A planned day allows you to spend less time trying to figure out what to do, and more time on activities that provide meaning and enjoyment

Organizing the day

Daily Care PlanRemember to make time for yourself, or include the person living with dementia in activities that you enjoy — for example, taking a daily walk.
A person with Alzheimer’s or other progressive dementia will eventually need a caregiver’s assistance to organize the day. Structured and pleasant activities can often reduce agitation and improve mood. Planning activities for a person with dementia works best when you continually explore, experiment and adjust.

Before making a plan, consider:

  • The person’s likes, dislikes, strengths, abilities and interests
  • How the person used to structure his or her day
  • What times of day the person functions best
  • Ample time for meals, bathing and dressing
  • Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues or sundowning)

Make sure to allow for flexibility within your daily routine for spontaneous activities.

As Alzheimer’s disease progresses, the abilities of a person with dementia will change. With creativity, flexibility and problem solving, you’ll be able to adapt your daily routine to support these changes.

Checklist of daily activities to consider:

  • Household chores
  • Mealtimes
  • Personal care
  • Creative activities (music, art, crafts)
  • Spontaneous (visiting friends)
  • Intellectual (reading, puzzles)
  • Physical
  • Social
  • Spiritual
  • Work-related (making notes)

Writing a plan

When thinking about how to organize the day, consider:
  • Which activities work best? Which don’t? Why? (Keep in mind that the success of an activity can vary from day-to-day.)
  • Are there times when there is too much going on or too little to do?
  • Were spontaneous activities enjoyable or did they create anxiety and confusion?

Don’t be concerned about filling every minute with an activity. The person with Alzheimer’s needs a balance of activity and rest, and may need more frequent breaks and varied tasks.

Daily plan example (for early- to middle-stages of the disease)

Morning

  • Wash, brush teeth, get dressed
  • Prepare and eat breakfast
  • Have a conversation over coffee
  • Discuss the newspaper, try a craft project, reminisce about old photos
  • Take a break, have some quiet time
  • Do some chores together
  • Take a walk, play an active game

Afternoon

  • Prepare and eat lunch, read mail, wash dishes
  • Listen to music, do crossword puzzles, watch TV
  • Do some gardening, take a walk, visit a friend
  • Take a short break or nap

Evening

  • Prepare and eat dinner, clean up the kitchen
  • Reminisce over coffee and dessert
  • Play cards, watch a movie, give a massage
  • Take a bath, get ready for bed, read a book

In general, if the person seems bored, distracted or irritable, it may be time to introduce another activity or to take time out for rest. The type of activity and how well it’s completed are not as important as the joy and sense of accomplishment the person gets from doing it.

Source: Alzheimer’s Association

No Small Roles in the Fight to End Alzheimer’s

Actress Nikki DeLoach is best known for her role on the series “Awkward” and her television movie roles on the Hallmark Channel. In the past year, her family has faced both her father’s diagnosis of Pick’s disease, a type of frontotemporal dementia (FTD), and the open-heart surgery of her newborn son Bennett.

Tell us about the last year and your experiences with your son and father.
In my house, we call the past year “the best and the worst” year of our lives. In the past year, I’ve experienced two open heart surgeries with my baby and the diagnosis of my father with Pick’s disease.

Both experiences were extraordinarily challenging and traumatic, however, my faith has grown exponentially. I am reminded daily of all of the miracles that have happened, the times we’ve been given mercy and grace as a family. We have hundreds of angels surrounding us — dropping off food, taking my oldest son on playdates and sleepovers, prayers … lots and lots of prayers. We are very blessed to be surrounded by an incredible community of people who have lifted us up in our time of need.

We live in times where there is still a stigma around sickness. My husband was hesitant to share information about my son’s heart defect with others. My mom felt the same about sharing my dad’s diagnosis. I knew from past experience that it is critical to not only reach out and ask for help but to share your story. When I gave birth to my first-born, Hudson, I didn’t want to admit to myself that I was going through severe postpartum depression. The shame I felt about not having those warm, fuzzy feelings other mommies felt after giving birth was palpable. I was struggling, and I waited a very long time to seek help, which was detrimental to me and my family.

I approached Bennett’s heart condition differently. I knew I would need help. After getting the word out about what we were dealing with, we had a referral for an appointment with the top children’s heart doctor in the country within a week. I have seen firsthand the power of asking for help when you need it; I no longer wait to ask. Also, by you sharing your story, you empower others to open up so that they no longer have to move through their pain in isolation.

When it came to Dad’s diagnosis, I said to my family: “People want to help us. People want to reach out. There are other people going through this, and we will never know how sharing our story may help another family.” When I know someone else is going through what I am going though, it helps me as much as it helps them. It helps us all feel less alone. I want people to be able to speak more openly about the help they need, because I have been there, and I know how important it is.

Dad’s diagnosis of Pick’s disease is very rare and affects the frontal lobe of the brain. It is fatal, and very aggressive. This illness completely changes the person. My dad is not the same person he once was. He was my touchstone, my moral compass … the most kind, loving, honest, patient and emotionally available human. I always used to say that he was so calm that he was one step above being asleep all the time.

There is not an ounce of that in him now. His patience is nonexistent. He can’t sit still; he sits down for five seconds and then begins pacing or heads out the door again. His memory doesn’t seem to last more than 60 seconds.

Dad always prided himself on “looking sharp”, as he would say. He wore nice cologne and loved to put on a crisp, ironed shirt. Now, we have trouble getting him to shower and wear clean clothes. One morning my mom discovered that he had put on four different shirts and two pairs of pants.

Although Dad was diagnosed just last summer, his symptoms have swiftly progressed. He may not even know who his kids are in six months.  We saw this with my grandfather, who passed away with Alzheimer’s disease. In that case, however, grandpa progressed slowly, and my family was able to wrap our brains around each transition. With Dad, it has been dropped at our doorstep. “Boom! Dementia is here.” Oh, and did I mention that he is only 64 years old? Yes. 64 years old. It’s devastating and so painful to watch and experience.

How has your mother been coping as a caregiver since your father’s condition has progressed?
It has been so hard. She is not only losing her husband, she is losing her friend. She has to be ten steps ahead of him all of the time, which is exhausting. She often lives in fear of him hurting himself or someone else because he is losing his ability to understand safe behavior.

We have to be super mindful of the spouses of people with the disease. They often experience a decline in health as well. The wear and tear caregiving does on the body and mind is substantial. It is a 24-hour job.

My mother has risen to the occasion in such a way that nothing short of heroic. However, heroes also need a team of people that lift them up and support them. This is why I encouraged her to reach out to her local chapter of the Alzheimer’s Association. The people who have been supporting her there are angels. They are helping her learn how to cope with what is happening to her and how to help my father.

Soon after reaching out to The Alzheimer’s Association for help, my mom did something incredible. Working with the Association gave her the wings to create a support group in her community, somewhere she felt safe talking about Dad — her local church. She is bringing in speakers and people involved with the Association who can help anyone and everyone who needs it. I am beyond proud of my mother for doing this. She has turned her pain into purpose, which is so courageous. I hope the group will grow as more people see how important it is to talk about what they are going through.

Can you talk a bit about your experience as a long-distance caregiver? How is your role different from those of your other family members? How do you all work together?
I live in Los Angeles, and to be away from Dad has been gut-wrenching. My dad does have support, as my whole family lives on our farm in south Georgia. This includes my mom, dad, brother, sister and her husband, their kids, my cousins, uncle, grandmother – my entire family.  But because I have a baby who has had two open heart surgeries in the last year, I have not been able to travel back home the way I used to. This has made everything even more difficult. In the past, I would fly home every other month.

There is nothing more I would love than to be able to be home, helping both my mom and dad. He did so much for me as a child. He was an amazing dad. I am desperate to give back to him for all that he has done for me. It’s just not possible right now, not until Bennett is completely well.

However, I support my family in other ways — phone calls, connecting my mom with people who can offer her local support making sure everyone in my family is on the same page and connected, or having my mom come stay with me in L.A. to give her a break. By staying connected, I can also track how my mom is coping and stay ahead of her needs at all times.

I am flying home with my older son in a few weeks to see my dad, and while it never feels like enough, I have to remind myself that I am doing the best I can given the circumstances facing my family.

At the end of the day, we have each other’s backs and stand together as a family. If you don’t have that family support, ask friends if they can be part of your support system. I’ve found that ten times out of ten, people will raise their hands to help.

What are some of the ways you’ve been spreading awareness of Alzheimer’s and dementia?
I’ve brought awareness to Alzheimer’s and dementia by starting a Walk to End Alzheimer’s team, posting blogs on my website “What We Are,” and speaking at events and on television. For Alzheimer’s and Brain Awareness Month in June, I hosted Hallmark’s morning show “Home and Family.” I wore purple and spoke on air about my dad, his illness and how people can help.

In the film industry, there are no small roles. Whether its hair and makeup, grips, PAs, an actor with one line or the lead, every role matters. I believe in this outside of the industry, too. There are no small favors. There are no small acts of service. In raising funds for the Walk to End Alzheimer’s with my friend Ashley Williams, we started by asking for small donations. After all, if 100 people give $5, that is fantastic. Every dollar raised, every friend that showed up to the walk, every person who posted on social media — it all makes a difference.

I’ve overcome so much in my own life. And now I am certain that that entire struggle was just preparing me not only for the last two years of my life, but to be able to use my platform for good. Between Children’s Hospital of Los Angeles and the Alzheimer’s Association, I feel a tremendous sense of purpose in my life being able to help others.

How do you share the life lessons you’ve learned and your bond with your dad with your own children?

It’s my dad’s mind that has a disease, not his soul or spirit. We have to just keep finding ways to connect with his soul. Music is a really big part of our story. He has always loved music and it has helped tremendously in his struggle with dementia. It’s like the music passes right through the disease into his spirit and being. My dad and I always bonded over music and I’ve passed that along to my children. We always have music on in the house and it brings great joy to our lives. And, in a way, I feel like I am passing along the legacy of my dad through music.

Every day I teach my boys about kindness, patience, giving back and being responsible – all the things my dad taught me. And I don’t just teach it, I live it. My philosophy is that you live your beliefs not through your words but through your actions. Walk the talk. I also am very involved in their lives. Just like my dad was my basketball coach and drove me to voice lessons, I am on three committees at my son’s school. I am there all the time.

What advice do you have for others grappling with Alzheimer’s or dementia in their family? What advice do you wish you had been given?
I recently completed a movie in Vancouver, and it was no accident that my driver to and from set was a woman whose dad also had Pick’s. For us to be paired together every day on that project was divine. We were meant to meet in that van. She gave me a really amazing piece of advice. She told me to love my dad, but not just with my heart. She said: “Touch him, hug him, kiss his face, give him all the physical contact and love you can possibly give. It’s not just for him; it’s also for you.” I thought that was beautiful. Every time I am with my dad, I hug him, I hold his hand, I rub his back and comfort him. In those moments, he connects with me. It’s almost as if our physical connection, like that with music, reaches his spirit.

Another piece of advice came from my dear friend Ashley Williams. Ashley and her sister, Kimberly, would text all the moments they experienced with their mom to each other – the difficult, heartwarming, and hilarious. They wanted to remember it all … together. I loved that. It’s like sharing a journal with your siblings. Sometimes you neglect to recall these stories when you are in the midst of the disease, but if you keep a text message chain going, you stay connected.

What lessons have you learned along the way?
I’ve found that you have to find the humor in the more difficult moments. I remind my mom of this daily. She was recently belaboring over her grandkids eating too much sugar. “These kids are going through Pop-Tarts like crazy!” Then she went out to my dad’s truck. There were piles of boxes and boxes of Pop-Tarts that he had been stockpiling; one of his many odd behaviors due to his disease. Yes, it is heartbreaking. But at the same time, it’s a 64-year-old man hoarding Pop-Tarts! You have to laugh.

Surprisingly, working in the entertainment industry has helped me cope with everything that comes with Dad’s diagnosis. I know not to take anything personally. You can only control your reaction to something, not other people’s behaviors. Especially when they have this disease. He or she will forget your birthday. You may not get a Christmas gift. You will be sick and they won’t think to make you soup or take your temperature. You will get yelled at or called names. It comes along with the territory. When someone you love with Alzheimer’s says something hurtful, you have to remember that it’s the disease speaking, not the person.

I’ve also been given great purpose in the last few years. I used to believe my purpose was to be an actor, producer, writer. Now I know that those things are my job. My purpose is greater than any job. You can definitely live out your purpose through your job, but it is not your purpose. My purpose is to become the best version of myself in this lifetime and to leave the world in a better place than I found it. I want to help make people’s lives better. I want to make a difference. Being a spokesperson for the Children’s Hospital of L.A. and a champion of the Alzheimer’s Association has given me tremendous purpose, and I couldn’t be more grateful. Life can be devastating and heartbreaking and you can also find great purpose and so much good in that pain. Miracles are all around us. A fantastic support system is just one call away. There is goodness all around us. We just have to be vulnerable and brave enough to open our hearts to it.

About Nikki: Nikki can be seen in the Hallmark movie “Reunited at Christmas,” which she also executive-produced. She also participated in the Los Angeles Walk to End Alzheimer’s on November 3 with friends and family.

All photos are courtesy of Nikki DeLoach.

Source: Alzheimer’s Assocition

Person-Centered Care at the Heart of Aging Life Care Managers® Work with Aging Adults

 Person-centered care is the idea that a person’s perspective, goals, and values should be at the forefront of their medical care. This method focuses on providing “thoughtful, systematic, and incremental” approaches to a patient’s health plan. It is now being recognized that placing the patient at the center is one of the more effective ways to promote positive health outcomes, as highlighted in two new articles published in the Journal of the American Geriatrics Society (JAGS).

Aging Life Care Managers® have promoted person-centered care in their own field for decades, working with families to create care plans that have the client’s goals at heart. These professionals, also known as geriatric care managers, help older adults and those with disabilities to coordinate the resources and funding needed to support their desired care plan. This can mean bringing in caregivers so that the client can continue to live at home, or finding the right assisted living facility to meet their needs. Aging Life Care Managers can help families who need a variety of services, including:

  • Health and Disability – From physical problems to mental health and dementia-related problems, Aging Life Care Managers interact with the health care system effectively and frequently. Aging Life Care Professionals attend doctor appointments and facilitate communication between doctor, client, and family.
  • Financial – Services may include reviewing or overseeing bill paying or consulting with a client’s accountant or Power of Attorney. Aging Life Care Managers provide information on Federal and state entitlements, connecting families to local programs when appropriate. They also help clients and families with insurance concerns, claims, and applications.
  • Housing – Aging Life Care Managers help families and clients evaluate and select appropriate level of housing or residential options.
  • Families – Aging Life Care Managers help families adjust, cope and problem-solve around long-distance and in-home caregiving, addressing care concerns, internal conflicts and differences of opinion about long-term care planning.
  • Local Resources – Aging Life Care Managers know the local resources in their communities and can help connect clients with the appropriate services.
  • Advocacy – Aging Life Care Managers are strong and effective advocates for clients and their families, promoting the client’s wishes with health care and other providers, ensuring that client’s needs are being adequately addressed.
  • Legal – Aging Life Care Managers refer to legal experts, like elder law attorneys, estate planners, and Powers of Attorney. Some provide expert opinion for courts in determining level of care and establishing client needs.
  • Crisis Intervention – Aging Life Care Managers offer crisis intervention when it is needed, helping clients navigate through emergency departments and hospitalizations, rehabilitation stays, and ensuring that adequate care is available to the client. For families that live at a distance, this can be a much-needed 24/7 emergency contact.

If you or your loved one needs care management services, visit the Aging Life Care Association® at http://www.aginglifecare.org to find an expert near you.

ABOUT the Aging Life Care Association ® (ALCA): ALCA (formerly known as the National Association of Professional Geriatric Care Managers) was formed in 1985 to advance dignified care for older adults and their families in the United States. Aging Life Care Professionals® have extensive training and experience working with older adults, people with disabilities, and families who need assistance with caregiving issues. They assist families in the search for a suitable nursing home placement or extended care if the need occurs. The practice of Aging Life Care™ and the role of care providers have captured a national spotlight, as generations of Baby Boomers age in the United States and abroad. For more information or to access a nationwide directory of Aging Life Care Professionals, please visit http://www.aginglifecare.org.

Source: Aging Life Care Association 

Why Do People Die from Alzheimer’s Disease?

Alzheimer’s disease (AD) is a very complex condition that is always fatal. It manifests initially with marked memory failure and lapses in judgement, but as it progresses, it also has a devastating effect on higher brain functions that many people take for granted. In the later stages of the disease, balance and coordination as well as autonomic functions like heart rate, breathing, digestion and sleep cycles are severely affected.

In the final stage, patients will be unable to perform the tasks that keep their bodies alive and functioning. Neurological damage and muscle weakness cause patients to lose the ability to coordinate even simple movements. Eventually, they are unable to walk, communicate, maintain control of their bladder and bowels, feed themselves, chew, and swallow food without significant assistance and careful supervision. The later stages can be both emotionally and physically taxing not only for patients themselves, but also for their family caregivers. At this point, if the subject has not already been discussed, family members may wish to consider hospice care for their loved one.

Read: Hospice Care for Advanced Dementia: When Is It Time?

A lack of self-awareness and self-care, prolonged confinement to a bed, feeding failure, inability to receive proper nutrition and dehydration are all factors in the development of other life-threatening health conditions. While brain damage associated with AD is the driving force behind the patient’s decline and incapacitation, these secondary illnesses and conditions are ultimately responsible for causing the patient’s decline and death. Complications from Alzheimer’s disease are commonly cited as such on death certificates. Because of this, deaths with a primary cause of Alzheimer’s disease and other forms of dementia are seriously underreported. This is especially true since dementia can go unnoticed as it progresses slowly over the course of many years. Furthermore, a significant number of patients never receive an official neurological diagnosis while alive or after passing.

The most prevalent cause of death in dementia patients is a secondary infection, commonly pneumonia. Bacterial infections could be easily remedied with a course of antibiotics in healthy individuals. However, advanced AD patients are usually too frail and immunocompromised to fight bacterial infections, even with the assistance of these drugs. Infections often return after treatment, and many patients or their family members make the decision to forgo aggressive treatment options and/or resuscitation efforts that may cause pain and discomfort for only a short-term benefit.

The following conditions can cause or contribute to multiple organ failure and death in seniors with severe Alzheimer’s disease:

  • Heart attack
  • Dehydration and malnutrition, whether due to a voluntary stopping of eating and drinking (VSED) health care directive or due to the natural dying process
  • Injuries and fractures caused by falls
  • Thromboembolisms
  • Pressure ulcers (bedsores)
  • Stroke
  • Kidney failure
  • Lung infections like aspiration pneumonia caused by dysphagia and inhalation of food particles
  • Sepsis (if infections like urinary tract infections and pneumonia spread)

Because these secondary conditions and their treatments can cause a great deal of anxiety and discomfort, many patients and their family caregivers prioritize quality of life over quantity and opt for comfort care in lieu of extensive life-sustaining measures. This is a difficult and highly personal choice for families, but it should be taken into consideration as early as possible before Alzheimer’s disease progresses to the point where patients can no longer make informed decisions about their own end-of-life care.

Source: AgingCare – Dr. Maurizio Grimaldi

How to Choose a Medicare Plan During the Open Enrollment Period

How to Choose a Medicare Plan During the Open Enrollment PeriodChoosing a Medicare plan is an important, but difficult decision. This choice could determine your health for years to come and save (or cost) you hundreds of dollars in out-of-pocket costs. However, during the Medicare Open Enrollment Period (OEP)/Annual Election Period (AEP) October 15 through December 7, you can re-evaluate your Medicare Advantage (MA/Part C) and/or Part D coverage to make sure you’re enrolled in the plan that fits your needs best. But with so many options it’s hard to figure out:

  1. If your current plan is best for you, and
  2. How to choose a better plan to fit your needs

Using the 4Cs of Medicare – CoverageCost, Convenience, and Customer Service you can assess the quality of your current plan and if needed, find a new one that better fits your needs. Here’s what you should consider when switching plans during the OEP/AEP.

Coverage

Before you begin comparing Medicare plans, you should start by assessing your health needs. Make a list of how many doctors you have, how often you have appointments, and your prescription drug needs. Then, you can begin assessing your coverage options. If you decide to add or switch Medicare Advantage and/or Part D plans there are few things you should consider about coverage:

  • Has your health status changed within the last year?
  • Are the services you need covered under your current plan (treatments, prescriptions, vision coverage, etc.)? Are there other health-related services that you would like covered? Examples might include alternative treatments, personal health devices, transportation or meal assistance?
  • Does your current plan or the plans you’re considering cover all the drugs you think you will need in 2019?
  • How do the plans rank under the star quality rating system? Are there any 5-star plans?

Cost

When you first enrolled in Medicare, you may have picked a plan based on the recommendation of a friend or just chose a fairly inexpensive plan since the coverage difference between each option seemed nominal. Now as a seasoned Medicare beneficiary there are a few cost considerations you should re-evaluate.

  • Are your financial circumstances the same?
  • What is the total projected annual and monthly cost with the plan you have vs the plan you’re considering? Have these costs gone up for 2019?
  • Was your out-of-pocket cost more expensive than you had planned? Are you visiting the doctor as much as you had anticipated? Or perhaps more frequently than expected, causing more copays and deductibles than you had anticipated? You may want to switch to a more affordable option.
  • Did you enter the Part D Coverage Gap (“donut hole”) in 2018?

Convenience

When deciding on the type of coverage you need you should also think about how accessible your physicians need to be. With Original Medicare, you can choose to see any physician who accepts Medicare. This means that you can access major medical centers nationwide. On the other hand, MA plans are more restricted in terms of the provider networks (doctors, hospitals, or pharmacies) they work with, which means you need to see doctors or visit hospitals that are “in-network” with your MA plan to avoid paying higher medical fees.

Before enrolling in a Medicare Part D plan confirm if your local pharmacy is included in their network. Typically these pharmacies will reduce your out-of-pocket cost for prescription drugs. Here are a few things you should consider before choosing a plan:

  • Do you plan on going a few long trips this year? All plans cover emergency hospital coverage, but if you need routine access to a physician while on vacation you may want to consider a plan that has a flexible network. Will you be able to get your prescriptions easily while away from home?
  • Do you have a preferred pharmacy and is it included in the plans you’re considering? Do the costs of your medications change under the different plans based on that pharmacy?
  • If you prefer to get your prescription in the mail, do the plans offer mail order delivery? Is the price higher or lower than picking it up at a “brick & mortar” pharmacy?

Customer Service

Last, but certainly not least, you should consider the quality of customer service you received with your current plan when thinking about switching.

  • Were you satisfied with the quality of care you desired with your current plan?
  • How responsive was your plan with questions or problems you may have had?
  • How did your plan help you manage your health care needs (access to primary care, specialist, and prescriptions)?

There are a lot of consideration when choosing a Medicare plan, but using the 4Cs helps you focus on the aspects that are most important. The good news is that you don’t have to search for Medicare plans on your own. Our Medicare questionnaire was created to help you figure out your options. You’ll be able to talk to a free licensed benefits advisor to discuss changing Medicare plans and discuss any other questions you may have about Medicare.

Remember that the Medicare Open Enrollment Period (OEP)/Annual Election Period (AEP) is October 15th – December 7th every year, so research your options and get expert advice before you make a final decision.

Source: Medicare Matters, Nationa Council on Agina

Getting a Diagnosis

Getting a Diagnosis

Some symptoms of dementia can mirror symptoms of other, treatable conditions, so it’s important to get a diagnosis for your symptoms.

Typically, a diagnosis starts by understanding and recognizing the 10 signs of cognitive impairment.

This guide will walk you through the more common steps of receiving a dementia diagnosis.

Did you know…

that your free Annual Medicare Wellness Visit (AWV) includes a Cognitive Impairment Assessment?

Step 1: Know the 10 signs

According to the Alzheimer’s Association, the most common cognitive symptoms of Alzheimer’s disease include:

  • Memory loss that disrupts daily life
  • Difficulty completing familiar tasks
  • Challenges with planning and problem solving
  • Confusion with time and place
  • Trouble understanding visual images and spatial relationships
  • Problems with speaking and writing
  • Misplacing things and losing the ability to retrace steps
  • Decreased or poor judgment
  • Withdrawal from work or social activities
  • Changes in mood or personality

Step 2: Talk to your doctor

If you recognize any of the 10 signs, the next recommended step is to call your primary care doctor. While he or she will be an important part of your care team, a primary care doctor may refer you to specialists to determine the cause of your symptoms. According to the National Institute on Aging, neurologists generally have the expertise to diagnose dementia, although other specialists may also be skilled in making a diagnosis. Members of your care team may include cognitive neurologists, neuropsychologists, psychologists, psychiatrists, and geriatricians.

Importance of Early Detection

Being proactive with your health by requesting the assessment can lead to many positive outcomes:

  • Understanding the cause and treating the underlying disease or health condition
  • Emphasis can be put on treatment, reducing symptoms and care, rather than searching for a diagnosis
  • Allows for the person and their family/significant others to have important conversations about the person’s wishes and their future care.
  • Gives the person and their family time to plan or create advance directives
  • Allows time for the person to assemble a care team that can help with medical, legal, financial and safety concerns
  • Promotes disease education and community support, through groups, etc.
  • May allow for access to research and clinical trials

Source: Help for Alzheimer’s Families

How to Console a Senior Who Is Afraid of Dying

“I’m dying.” These are words that most of us dread hearing from the people we love. However, death is an inescapable part of life. If it hasn’t happened already, chances are you’ll be called upon to help a parent, spouse, friend or other loved one through the valley at some point. Yes, it can be a terrifying prospect, but it is also an honor. This is a valuable opportunity to help your loved one make the most of their remaining time on earth, to assist them in taking the next step without regret, and to create priceless memories for you to cherish once they’re gone.

There are some hurdles throughout this process, though. The end of life often stirs up many powerful emotions, among the most poignant being anxiety. Because death is different for everyone and we know so little about what happens after a person passes, patients and family alike are often overwhelmed by fear of the unknown. Below are the seven most common fears associated with dying and how caregivers can help console their loved ones at the end of life.

Fear of the Dying Process

Apprehension about the actual dying process typically stems from a fear of pain and discomfort. People at the end of life may wonder, “How will I get through this?”

Make sure your loved one knows that they will experience little or no pain unless they choose to. Hospice care providers specialize in providing pain and symptom management for terminal patients. Staff members are trained to interpret what patients need by reading verbal and nonverbal cues, and they will discuss the benefits and drawbacks of each option with patients and their families.

Fear of Losing Control

Some individuals who are dying are able to continue leading a relatively active and normal life until the very end. But those who are very ill typically must rely on family members and caregivers to help them with activities of daily living (ADLs) in their remaining months, weeks or days. Many patients are uncomfortable with the thought of depending on others for supervision and assistance, and this is normal.

To help dispel this fear, encourage your loved one to stick to their usual routine for as long as possible. A life-threatening or terminal diagnosis does not change who the person fundamentally is. When it becomes clear that they will need to accept care from others, arrange for them to meet with and get to know their caregivers in advance, especially if medical professionals are involved. Becoming familiar with nurses and aides before their full services are required can alleviate discomfort and fear.

Furthermore, if you haven’t already discussed end-of-life wishes with your loved one, time is of the essence. Most people execute a living will, do-not-resuscitate order (DNR), physician orders for life-sustaining treatment (POLST) form, or other legal document to spell out the type of care they DO and DO NOT wish to receive. Discussing these matters and putting them into writing while your loved one is still competent to make decisions will help them feel more confident that their wishes will be respected even if they are unable to convey them.

Fear of Leaving Loved Ones Behind

Some people at the end of life wonder less about their own predicament and more about how their loved ones are coping and how they will handle the loss. They may wonder, “What is going to happen to my family? How will they manage after I’m gone?”

Only those closest to the dying person can alleviate this fear. Be willing to frankly discuss with your loved one what will happen to everyone once they die, and do everything you can to reassure them that you will all be okay. If children or dependent adults are involved, help to formulate a detailed plan for their future care.

Fear of Others’ Reactions

The focus during a loved one’s end-of-life experience is to keep them as comfortable and relaxed as possible. This is not an easy process to go through or to witness, and emotions usually run high. It’s natural to feel fear and sadness, but after the initial shock has worn off, try to behave normally. Relish this time together instead of dwelling on the inevitable loss. It is okay to express your true emotions but remember that this experience is not about you. Be respectful of your loved one’s need for peace and support.

Make sure that all caregivers and family members (yourself included!) are getting enough sleep, healthy meals and emotional support. The effects of going without these necessities is evident in both appearance and demeanor and may cause your loved one additional worry. Lastly, ensure that all caregivers and visitors are told in advance what to expect. This will help to avoid reactions of shock or fear that can be unsettling for the dying person.

Fear of Isolation

Fear of any kind typically causes us to long for the company and reassurance of those we love most. The possibility of facing the end of life alone would cause anyone considerable anxiety, and this is a common concern for many seniors. They wonder if their friends and family will come to visit them and if they will continue being attentive and supportive until the very end.

Quite simply, make sure that regular visits with close friends, family members and volunteers are scheduled. Ensure the senior feels loved and important, but avoid exhausting them with nonstop visitors. If you don’t live near your loved one or cannot commit to frequent visits for other reasons, consider taking advantage of hospice care providers, volunteer organizations or church ministries. End-of-life care from these groups may include regular visits from nurses, aides, clergy, musicians or volunteers that can dramatically increase a patient’s quality of life.

Fear of the Unknown

Will there be life after death? What can I expect? Everyone has dwelt upon these questions at one time or another. Even the greatest self-professed skeptic wonders what will happen after they take their last breaths. Addressing this concern has physical, emotional and spiritual implications. Even if your loved one is not religious, consider asking a priest, rabbi, minister, pastor, etc. to come speak with them. Outside resources such as these can offer a gift of peace, regardless of past doubts and skepticism.

Fear That Life Has Been Meaningless

People who are leaving this world need to hear that they are valued, that their accomplishments had a positive impact on the world and that they won’t be forgotten. Don’t miss the chance to tell your loved one how much they mean to you and remind them of all the good they brought to your life. Reassure them that their life had purpose and meaning, and encourage others to do the same, either in person or through cards and letters. Also, take time to go through photo albums, share memories and absorb life lessons from your loved one.

Source: AgingCare – Donna Authers

Medication Safety

A person with Alzheimer’s or other dementia may be prescribed multiple medications, and may take medications for other conditions as well. Medications are powerful. Care needs to be taken, especially when more than one medication is being used. Use these safety tips to help avoid medication-related problems.

Working with the doctor and pharmacist

  • Coordinate with all care providers. A person with Alzheimer’s may be under the care of more than one doctor. Make sure all health care team members know about any prescription and over-the-counter medications, including herbal or vitamin supplements. Each time you go to an appointment, take a list of current medications and dosages.
  • Ask your doctor or pharmacist to check for possible drug interactions. When a new medication is prescribed, ask whether it is okay to take it with other current medications. Also, remind the health care team of any allergies to medications or side effects that have occurred in the past.
  • Get details. Find out as much as possible about every medication, including name, purpose, dosage, frequency and possible side effects. If troubling side effects occur, report them to the doctor.
  • Take as directed. Do not ever change dosages without first consulting the doctor who prescribed the medication. If cost or side effects are an issue, tell the doctor. There may be other solutions.
  • If swallowing is a problem, ask if the medication is available in another form. A liquid version may be available, or in some cases medications can be crushed and mixed with food. However, no pill or tablet should be crushed without first consulting your physician or pharmacist. Crushing some medications may cause them to be ineffective or unsafe.
  • Maintain medication records. Keep a written record of all current medications, including the name, dosage and starting date. Consider signing up for MedicAlert®+ Alzheimer’s Association Safe Return®, a service that provides an online personal health record of health conditions and current medications. Or, carry a medication list with you in your wallet or purse. This record will be invaluable in the event of a serious drug interaction or overdose.

Giving medication to someone with Alzheimer’s

In the early stages of Alzheimer’s, the person with dementia may need help remembering to take medications. As a caregiver, you may find it helpful to:

  • Use a pill box organizer. Using a pill box or keeping a daily list or calendar can help ensure medication is taken as prescribed.
  • Develop a routine for giving the medication. Ask the pharmacist if medications should be taken at a certain time of day or with our without food. Then create a daily ritual. This might involve taking medications with breakfast or right before bed.

As the disease progresses, you’ll need to provide a greater level of care. In addition to using a pill box organizer and keeping a daily routine, try these tips:

  • Use simple language and clear instructions. For example, say “Here’s the pill for your high blood pressure. Put it in your mouth and drink some water.”
  • If the person refuses to take the medication, stop and try again later. 
  • If swallowing is a problem, ask if the medication is available in another form. Talk to the doctor who prescribed the medication or the pharmacist to find out if a liquid version is available or if it is safe to crush the medication and mix it with food. Be aware that no pill or tablet should be crushed without first consulting your physician or pharmacist, since it can cause some medications to be ineffective or unsafe.
  • Make changes for safety. Be sure to place medications in a locked drawer or cabinet to avoid accidental overdose, and throw out medications that are no longer being used or that have expired. For more caregiving and safety tips, sign up for our weekly enews. Also join ALZConnected, our online community and message boards, where caregivers exchange ideas and receive support.
  • Have emergency numbers easily accessible. Keep the number of your local poison control center or emergency room handy. If you suspect a medication overdose, call poison control or 911 before taking any action.

Source: Alzheimer’s Association

Proactive Steps to Help Minimize Wandering Behavioral Symptoms

Proactive Steps to Help Minimize Wandering Behavioral SymptomsLearning a loved one has Alzheimer’s disease or another dementia can be frightening. But preparing for the behavioral symtoms that could result may help both individuals and their families better cope with the disease and keep loved ones safe.

Always ask yourself if that individual has an unmet need that could trigger a wandering incident. Proactive steps can help families reduce the risks for wandering and be better prepared if an incident occurs.

Get Ready

Consider setting up an alert network through the Missing Senior Network℠ program. This free web service allows family caregivers to create an account with a list of contacts to alert in the event a senior goes missing. The service then provides the family caregivers a way to alert the network of friends, families and businesses to be on the lookout for their missing senior if he or she wanders. Setting up this network in advance can help families be prepared to handle any incident of wandering.

Also, you can help protect an individual at risk of wandering by ensuring he or she always is wearing identification. Consider an ID bracelet, such as one from the MediAlert® + Alzheimer’s Association Safe Return® Program. This is a fee-based 24-hour nationwide emergency response service for individuals with Alzheimer’s disease or a related dementia who wander or have a medical emergency.

Prepare the Home

Safeguarding a home is one important preparedness step family caregivers can undertake for a loved one prone to wandering. Many products exist on the market to help keep older adults with dementia safe at home. These include alarms that attach to doors and windows, covers for doorknobs that help prevent an individual from leaving home, and higher-security locks. Other strategies include placing locks out of eye-level view, and painting doors and door frames the same color as walls to “camouflage” exits.

A caregiver named Arlene says her husband often awakes at night not knowing where he is or thinking it is time to get up. “So we put a motion detector in the bedroom,” she said. “That has worked well for me.”

Following, from Home Instead, Inc., franchisor of the Home Instead Senior Care® network, are other tips to be proactive about safety and wandering:

  • Make a path in the home where it is safe for an individual to wander. Closing off certain parts of a room or locking doors can help achieve this goal. Such paths also can be created outdoors – in a garden, for instance.
  • One family caregiver remembers her husband getting outdoors in the middle of the night in the dead of winter. “A fence kept him from wandering from home so he came into the garage. He was banging on the door at 5 a.m., which woke me up. If he had gotten out of the yard, he would possibly have died from the cold.” Install barriers and fences in the yard to help ensure that a loved one doesn’t wander from home or into unsafe territory.
  • Keep walkways well-lit. Add extra lights to entries, doorways, stairways, and areas between rooms and bathrooms. Use night lights in hallways, bedrooms and bathrooms to help prevent accidents and reduce disorientation.
  • Remove and disable guns or other weapons. The presence of a weapon in the home of a person with dementia may lead to unexpected danger. Dementia may cause a person to mistakenly believe that a familiar family member is an intruder.
  • Place medications in a locked drawer or cabinet. To help ensure that medications are taken safely, use a pill box organizer or keep a daily list and check off each medication as it is taken. Check out Simple Meds at SimpleMeds.com for a way to help seniors manage medications.
  • Remove tripping hazards. Keep floors and other surfaces clutter-free. Remove objects such as magazine racks, coffee tables and floor lamps.

For more information from the Home Instead Senior Care network and the Alzheimer’s Association about safeguarding a home for someone with Alzheimer’s, visit CaregiverStress.com and the Alzheimer’s Association. You’ll also learn more about how to deal with wandering and other common Alzheimer-related behavioral symptoms in the book “Confidence to Care”, as well as the accompanying free mobile app.

While there are many ways to be proactive in helping to minimize wandering behavioral symptoms, it’s also important to know what to do when the unexpected happens. Check out what to do in a Wandering 911 situation.

Source: Help for Alzheimer’s Families

CDC: Alzheimer’s disease, dementia cases to double by 2060

CDC: Alzheimer's disease, dementia cases to double by 2060The number of people projected to have Alzheimer’s disease or dementia in the United States is expected to double by 2060, a study from the Centers for Disease Control and Prevention says.

In 2014, there were 5 million people in the U.S. with Alzheimer’s or dementia. The CDC estimates by 2060, that number will grow to 13.9 million.

“Early diagnosis is key to helping people and their families cope with loss of memory, navigate the health care system, and plan for their care in the future,” CDC Director Dr. Robert R. Redfield said in a statement.

The study, which the CDC said is the first to forecast estimates of Alzheimer’s by race and ethnicity, found non-Hispanic whites will have the most total cases of Alzheimer’s and dementia. However, because of population growth, Hispanic Americans will see the largest projected increase in cases.

Among people who are 65 and older, African-Americans have the highest prevalence of Alzheimer’s and dementia at 13.8 percent, followed by Hispanics (12.2 percent) and non-Hispanic whites (10.3 percent).

By 2060, researchers project 3.2 million Hispanics and 2.2 million African-Americans will have Alzheimer’s disease or dementia. The CDC said as more people survive other diseases and grow older, the odds of being diagnosed with dementia go up.

The study was published Thursday in the journal Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.

Kevin Matthews, a health geographer and lead author of the study with the CDC’s Division of Population Health within the National Center for Chronic Disease Prevention and Health Promotion, said in a statement early diagnosis is key not just for patients, but for caregivers who need support.

“It is important for people who think their daily lives are impacted by memory loss to discuss these concerns with a health care provider,” he said.

Source: USA Today by Brett Molina