Alzheimer’s Awareness Diagnose & Detect
Our Mission:
To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Diagnose & Detect Santa Barbara 1528 Chapala Street, Suite 204 Santa Barbara, CA 93101 805.892.4259
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San Luis Obispo County 2 June 2018 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
3232 S. Higuera Street, Suite 101A San Luis Obispo, CA 93401 805.547.3830
alz.org/cacentral Social Media Facebook Alzheimer’s Association, California Central Coast Chapter | @AlzCentral Twitter @AlzCentral LinkedIn Alzheimer’s Association, California Central Coast Chapter
Dementia is complicated, but having a conversation about it doesn’t have to be.
This June, Alzheimer’s & Brain Awareness Month, the Alzheimer’s Association is highlighting the critical importance of early detection and diagnosis of Alzheimer’s disease. While receiving an Alzheimer’s diagnosis is devastating, there are many medical, financial, emotional and social benefits to receiving an early diagnosis – not only for the person living with the disease, but for their caregivers and family members as well. The journey toward the diagnosis, however, is often complicated by barriers which delay or prevent diagnosis. These include: denial, fear, anxiety, stigma, lack of disease awareness, failure to recognize warning signs, and difficulty initiating conversations about cognitive decline – even when family members know something is wrong. The purpose of this Diagnosis & Detection insert is to allow the person with the disease to play an active role in planning for the future and making the most of life. Benefits of early detection and diagnosis include: • Accurate diagnosis – Seeking an early diagnosis can help determine if someone’s cognitive changes are truly due to Alzheimer’s or some other, perhaps even treatable, condition. • Planning for the future – Early diagnosis allows individuals more time to plan for the future while they are cognitively able to make legal, financial and end-of-life decisions. • Participation in clinical trials – Early diagnosis allows individuals to enroll in clinical trials that advance research and may provide medical benefits. • Medical benefits – Early diagnosis allows
individuals to adopt lifestyle changes that may help preserve their existing cognitive function for as long as possible; such interventions include controling blood pressure, smoking cessation and exercise. • Emotional and social benefits – Early diagnosis provides individuals with the best opportunity to spend time doing meaningful activities and interacting with the most important people in their lives. It can also open doors to many educational and support programs. During Alzheimer’s & Brain Awareness Month, the Alzheimer’s Association is sharing 6 Tips for Approaching Alzheimer’s, a list of best practices for talking about the disease with someone who may be experiencing symptoms. It is also sharing personal stories from families who have overcome common communication barriers and are benefiting from early diagnosis. Please enjoy this publication, refer to it often, or pass it on to a neighbor or loved one in need. Feel free to call us with questions. We are here to help. Spread the word about Alzheimer’s by using #ENDALZ on social media this year-round! Visit alz.org/abam to get started.
Blondes vs. Brunettes – Santa Barbara Bishop Diego Garcia High School July 21, 2018
Walk to End Alzheimer’s – San Luis Obispo Mission Plaza October 27, 2018
Walk to End Alzheimer’s – Santa Maria Waller Park September 29, 2018 Walk to End Alzheimer’s – Oxnard The Collection at RiverPark September 29, 2018 Walk to End Alzheimer’s – Westlake Village 3011 Townsgate Road October 27, 2018
Sincerely, Donna Beal, MPH, MCHES Vice President, Program Services & Advocacy Alzheimer’s Association California Central Coast Chapter www.alz.org/cacentral 24 Hour Hotline: 1-800-272-3900
Walk to End Alzheimer’s – Santa Barbara Hilton Santa Barbara Beachfront Resort November 3, 2018 Alzheimer’s Women’s Initiative Luncheon ‘Your Brain Matters’ Hilton Santa Barbara Beachfront Resort November 30, 2018 Alzheimer’s Comedy Benefit Show Thousand Oaks Civic Arts Plaza – Scherr Forum Theatre January 27, 2019
Diagnose & Detect Year Established
Santa Barbara The Alzheimer’s Association, California
Central Chapter was established in 1984.
opportunity to be at the forefront in the fight against the disease and helps us move closer to a world without Alzheimer’s
1528 Chapala Street, SuiteJoin 204 the Aspire Society: With a gift of
Service Area
$10,000 or more, you can be a part of our Santa 93101global society of major donors, supporting We provide a fullBarbara, range of freeCA and vital services to more than 30,000 families a wide range of strategically important 805.892.4259 through offi ces in Santa Barbara, Ventura, initiatives to advance the effort to end and San Luis Obispo Counties. Many of Alzheimer’s disease. those services are available in Spanish. Join the Founders Society: The Mission Founders Society honors those who have To eliminate Alzheimer’s disease through remembered the Association in their estate 120 East Jones Street, Suite 113 plans. For many supporters, estate gifts the advancement of research; to provide off er the greatest potential to change the and enhance care and support for all Santa Maria, CA 93454 future of Alzheimer’s disease. affected; and to reduce the risk of dementia through the promotion of brain health. Every gift moves us closer to our vision 805.646.6432 of a world without Alzheimer’s. Thank Volunteer Opportunities you for considering how you can make the We need you! We offer a wide range greatest difference. To learn more, please of volunteer opportunities, from helping contact Mitchel Sloan, Vice President with a special event to serving as a support of Development & Communications at group facilitator. are interested in Suite 201 2580If you E. Main Street, 805.892.4259, x102 or at msloan@alz.org. volunteering, please contact your local Programs Alzheimer’s Association office to learn Ventura, CA 93003 more about how you can utilize your talents Our vital and free program services 805.494.5200 to make a diff erence in the fight to end include: Alzheimer’s. o Education for Caregivers and Professionals Giving Opportunities
Santa Maria
Ventura County
4620 & 4630 Song Lane in Orcutt PHONE ( 8 0 5 ) 3 1 0 - 6 9 9 6 EMAIL i n fo @ s l re s o u rce s . co m WEB m a g n o l i a ca re . n e t
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LICENSE 425801520 & 425801723
3
San Luis Obispo County
o Information and Referrals Sponsor a special project or major event: You or your company or foundation o Support Groups 3232 S. Higuera Street, Suite 101A can help launch or grow special projects o Family Care Consultations with the power to transform the future San Luis Obispo, CA 93401 o Community Awareness of Alzheimer’s. You can also be a part of Our Association is the largest private or high-profile events such as the Walk to End 805.547.3830 nonprofit funder of Alzheimer research in Alzheimer’s, The Longest Day, Blondes the world, providing more than $315 million vs. Brunettes, “Dementia: Current Trends to more than 2,200 scientific investigations & Future Trends” Professional Education Conference, and the Alzheimer’s Women’s since our inception. Initiative ‘Your Brain Matters’ events. For more information, please contact
alz.org/cacentral
Join the Alois Society: Membership in the prestigious Alois Society, with an annual gift of $1,000 or more, provides the
Social Media Facebook
Donna Beal, Vice President of Program Services & Advocacy at 805.892.4259, x107 or at dbeal@alz.org.
Board of Directors
Alzheimer’s Association,
Teresa Valko, Chair
Jessica Foster
Jeff Branco
Michael James
Danna McGrew, Emeritus
John Dixon
Sharon Kennedy
Lol Sorensen, Emeritus
Katina Etsell
Kenneth Kosik, MD
Charlie Zimmer, Emeritus
California Central Coast Leigh Cashman, Vice Chair Kiersten Hess Twitter @AlzCentral
Richard Mann
Chapter | @AlzCentral Robert Hirsch, Emeritus
Diagnose & Detect
Getting the Help You Need
4 June 2018 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
by Karen Ortiz and Ashley Costa
The primary caregiver is often “on duty” 24/7 and has limited time off for a break. Spousal caregivers may feel like they should be able to handle the stress of being together constantly; after all they have been married for years. Adult children caregivers may be juggling work and children, or may be the sole family member responsible for their parent’s care. Most caregivers hold out as long as they can to provide care without professional help or using supportive resources, taking on the mantra of “I’ll just pull myself up by my bootstraps.” Let’s cut to the chase and repeat after me: “I need help.” The fact is that the desire to be in control of life and to be independent, even in caregiving, has clouded our vision. Society has somehow linked weakness with this statement, yet it is crucial to providing quality care to a loved one with dementia. Contrary to the stigma, help strengthens the caregiver and allows him to continue providing objective and compassionate care. Help can come in many forms, through a support group, an educational program or training, in-home professional care or the division of responsibilities among family members. However, possibly the most beneficial form of help to a family caregiver comes through respite, or a break. One option to get this break that family caregivers frequently overlook is the option to use an adult day center. An adult day center is a safe, supervised environment for someone with dementia to be at during the day. These centers provide the caregiver with an opportunity for respite, the chance to be in their home without the person with dementia and the security of knowing that their loved one is being taken care of and safe. Centers offer the person with dementia the chance
to get out of the house, to participate in activities and to be socially involved with people other than their primary caregiver. Though this sounds like a great option, many caregivers are hesitant and object when it comes to using an adult day center for their loved ones. Here we’ll cover some of the most common concerns for families: Concern #1: My mom just isn’t a social person. Dementia compromises a person’s ability to initiate a task, to create a plan with follow through and to want to try new things. These are effects of the disease and are often present years before a diagnosis is made. This can make it difficult for family members to distinguish between mom’s “personality” and the dementia. The fact is, every human is social by nature and desires other human contact. Not only does this connection with others meet emotional needs, but also it stimulates and forces our brains to engage in life. Social skills are often retained well into dementia; however, these are often hidden by the person’s inability to initiate and complete an activity on their own. In addition, being around the same person all the time gets old, whether you have dementia or not. If the alternatives to using an adult day center are your loved one following you around the house all day, sitting staring out the window, watching TV she can’t track, or doing nothing, then it probably doesn’t matter what type of person your mom is — you could both benefit from using an adult day center. Concern #2: My dad is too early in the disease process for something like that. If your loved one is at the point where you are concerned about leaving him home alone, or only can for a few hours, then it’s time to look at using an adult
day center. Adult day centers are best suited for the individual who can still carry on conversation to some extent and who can still participate in the activities around them. Families often believe that this will be a resource they will use later when their loved one doesn’t know where or who they are. The reality is that at that time, it may be too late to use this amazing resource. Depending on the type of day care license, centers may have limitations on whether they can accept someone who is incontinent, or requires assistance walking. However, adult day health care centers like the Santa Maria Wisdom Center, can continue to care for people with moderate to severe dementia or those with medical health concerns who require more assistance with their activities of daily living like toileting. Concern #3: My spouse wouldn’t want to go. As with so many other issues related to dementia, it is likely that your spouse will never want to attend an adult day center if you asked them point blank. This is similar to how they may never want to quit driving, or have help come in or let you assist with dispensing their medications. The dementia affects their judgment, and they don’t see the same complete picture of reality that you see. They may not recognize the need for such an activity for themselves, though it is obvious to you that they cannot be left home alone. This is where family caregivers often must take control and make the decision that is in the best interest of the person with dementia. Once you’ve made that decision to try an adult day center, then it’s time to come up with the right pitch to get your loved one to go. Concern #4: We can’t afford it. In this economic climate, everyone is concerned with costs, and many are going without the “extras” in life.
While this idea makes sense, family caregivers still need a break from time to time and take care of themselves. While hiring a private caregiver can cost $15 per hour, and a caregiver from an agency $20–35 per hour, using an adult day center is a much more affordable option for the amount of respite provided. Most adult day centers have a set price per day, but if your loved one attends all the hours provided, the cost usually averages to about $10 per hour. You should also inquire about sliding-scale fees and possible eligibility for services like respite grants and veterans benefits. Concern #5: How would I get her there? On the Central Coast where there are limited day center resources and yet a broad geographical area, this can be difficult. However, there are options. Of course, taking and picking up your loved one may be an option for some. Though the drive one way could be up to 30 minutes depending on where you are in the county, it may be worth it for the person with limited financial options who needs respite. Some day centers provide transportation services. In Santa Barbara, Easy Lift Transportation and Help of Carpinteria provide point-to-point transportation at very low cost for seniors. Also, think outside the box – do you have a family member or friend who could take that on once or twice a week for you? While there are many reasons caregivers initially hesitate to use an adult day center, there are many more reasons why they should try it. It is undeniable that family caregivers need time off – time to themselves, to recharge and decompress. Persons with dementia also need time away, time to socialize and be stimulated. Adult day centers are a great option to meet both of these needs.
Diagnose & Detect
Research Breakthroughs by Tré Lamb
Alzheimer’s disease, the only leading cause of death that has yet to be cured, continues to grow in the number of individuals afflicted, with an estimated 5.7 million currently living with the disease. This is a steady increase of 14 percent from 2017, during which the total national cost reached an astounding $259 billion. In 2018, this cost has also risen to an estimated $277 billion, and at its current rate of increase, is expected to reach an staggering $1.1 trillion by the year 2050. The financial cost, however, cannot compare to the in-home care provided by family members, friends, and other unpaid caregivers, who make up eightythree percent of the total help provided. 2018 has seen its share of highlights; perhaps most notably with a substantial increase for Alzheimer’s disease funding that has recently been signed into law. As Alzheimer’s has yet to be cured, and
the rate of developing the disease yet to be slowed, funding research remains a priority. March 23, however, marked a noticeable shift in positive direction; advocated for by both the Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM), the $414 million increase in research funding brings total funding at the National Institutes of Health to $1.8 billion. This is now the third year in a row the effort made by the Alzheimer’s Association and the AIM movement has been recognized and seen through by Congress. An article published in April shows that researchers are proposing a shift in their working definition of Alzheimer’s disease, from a framework focused primarily on cognitive changes and behavioral symptoms with confirmation from biomarkers, to a framework based on physiological changes that occur in the brain and body. Though
the shift remains strictly for research purposes and is not meant for clinical use quite yet, the potential benefits could prove to be very useful, as it acknowledges that Alzheimer’s disease can actually start up to 20 years in the brain before any visible memory or thinking problems even occur. This change marks a significant shift in how Alzheimer’s disease is being approached by researchers and clinicians. Though only still considered a research proposal, as it must be validated in diverse global populations and natural history studies, this framework intends to advance the specific kind of research that will then discover more Alzheimer’s biomarkers and potential treatment and prevention strategies. An essential component in completing clinical trials and perhaps future research breakthroughs is the participation and involvement from the Alzheimer’s community. However,
according to a survey conducted by the University of Pennsylvania, where a random sample of adults was analyzed to understand reactions regarding a man with middle-stage Alzheimer’s, a stigma surrounds those with the disease and their respective employers. The results from the survey showed over half (55.3 percent) of the respondents expected the person to be discriminated against by employers and left out of medical decision-making. The results from the study indicate a need for public education and policies to address concerns about employer and insurance discrimination. Research is the primary force that will one day find a cure or prevention to this disease, and the most successful way to continue this advance is through advocacy and public policy. These successful milestones in funding and awareness are essential to achieving our goal of a world without Alzheimer’s.
Lee Central Coast Newspapers / Alzheimers Awareness Guide / June 2018
5
Diagnose & Detect
The MIND Diet: Can it reduce your risk? by Anju Agarwal / RN, HSM
6 June 2018 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
For years we have heard about the Dietary Approaches to Stop Hypertension (DASH) diet for high blood pressure or the Mediterranean diet for heart health but when it comes to protecting your brain health, a hybrid of the two diets, the “MIND” diet may be our best approach. A Rush University Medical Center research study shows that the MIND diet may reduce the risk of developing Alzheimer’s disease by as much as 53 percent. Even those who followed the diet moderately well reduced their risk of Alzheimer’s by about one third. The MIND diet helped to slow the rate of cognitive decline and defend against Alzheimer’s regardless of other risk factors, such as smoking. The “MIND” diet, short for “Mediterranean-DASH Intervention for Neurodegenerative Delay”, is heavy
on natural plant-based foods while limiting red meat, saturated fats, and sweets. The MIND diet identifies 10 brain-healthy food groups a person should eat and five unhealthy food groups to avoid. The MIND diet is flexible, which makes it easier to follow without feeling deprived. The MIND diet recommends frequent servings of green leafy vegetables and berries. Healthy choices such as kale, spinach, and blueberry salads work brain-saving magic because they reduce inflammation in the brain, which has been strongly connected with cognitive decline. The diet’s effectiveness could be related to the positive effect it has on the vascular system, which in turn positively affects brain health. Researchers found that six servings of green vegetables a week provide the greatest brain benefits.
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There is considerable scientific evidence that healthy dietary patterns are associated with decreased Alzheimer’s risk and slower cognitive decline. The foods to avoid are those high in saturated fat, including beef, lamb, pork, butter, cheese, and sausage. Instead, follow these guidelines: • High intake of vegetables, legumes, fruits, and cereals • High intake of unsaturated fatty acids (mostly in the form of olive oil) • Low intake of saturated fatty acids • Moderately high intake of fish • Low-to-moderate intake of dairy products (mostly cheese or yogurt) • Low intake of meat and poultry • Regular but moderate amount of alcohol, primarily in the form of wine The study’s results, says Maria Carrillo, Chief Science Officer at the Alzheimer’s Association, show the positive effects of improving nutrition even slightly. “Of course, you get the biggest result if you follow the diet completely, but even little changes can have a significant impact.” As with all changes in lifestyle, it is wise to first consult with your doctor. The suggested changes are as listed below: • Whole grains: Eat at least three servings a day of whole grains, oats, and brown rice. Processed white flour is a no-no, as are sweets and pastries. • Leafy green vegetables: The MIND diet kicks the veggie requirement up a notch, recommending a salad plus one other vegetable every day. • Wine: You may have a glass a day and it is recommended to consume with dinner. • Nuts: Your go-to snack. Opt for about a handful of unsalted almonds, or other varieties that are especially high in fiber, vitamins, and the omega-3 fatty acids. • Fish: You should eat an omega-
3-rich catch once a week, or possibly more such as fish like wild salmon. • Berries: You should shoot for two servings a week; blueberries, in particular, are strongly recommended. • Olive oil: The approved version of fat. Limit use of butter or margarine to one a day. • Cheese: The MIND diet has been called a wine-and-no-cheese party. It suggests you go very light on the cheese. • Beans: Whether you go for kidney, chickpeas, or lima, the recommendation is to eat them every other day. It is important to remember that high levels of antioxidants from fruits and vegetables and increasing your level of protein may help to protect against some of the damage to brain cells associated with Alzheimer’s disease. The MIND diet is linked to lower levels of cholesterol, which recent research has suggested may be associated with memory and thinking problems. For most people, following the MIND diet is a good way to ensure a healthy diet, which is important for maintaining good brain function. Scientists need to do more research on the MIND approach, but it is a very promising start! References: 1. Morris MC, et al. MIND diet associated with reduced incidence of Alzheimer’s disease. Alzheimer’s and Dementia. 2015;11:1007. 2. Berendsen AM, et al. Association of long-term adherence to the mind diet with cognitive function and cognitive decline in American women. Journal of Nutrition, Health and Aging. 2017;11:1. 3. Improving nutrition even slightly can have a positive effect by Kathleen Fifield, AARP, July 17, 2017
Diagnose & Detect
State Champions work to improve early detection in CA by Donna Beal / MPH, MCHES
This past February, Alzheimer’s
Why are these two bills so important
The impact on families is major, as
Health. In addition, the Centers
Advocates throughout California met
in California? Well, we know that
the costs for care and medication are
for Medicare and Medicaid have
with their elected officials to discuss
Alzheimer’s disease is a large burden
enough to bankrupt families. Plus,
developed a permanent CPT code
the importance of early detection and
and is growing. Former U.S. Surgeon
Medicare and MediCal bear two-thirds
so that physicians can bill for Care
diagnosis for Alzheimer’s disease and
General David Satcher warned that
of the health and long term care costs
other forms of dementia. We urged
“Alzheimer’s is the most under-
for those with Alzheimer’s. Already,
Management.
legislators to support two critical
recognized threat to public health in
more people with Alzheimer’s live in
pieces of legislation that would:
the 21st century.” In California alone
our state than in any other, and we’re
650,000 individuals are living with the
the second most expensive Medicaid
disease. The number of Californians
state.
1. Fund a $2.2 million state budget request to fund a one-time, evidence-
informed public education campaign in living with Alzheimer’s disease or a
We know that there are interventions
The earlier Alzheimer’s is detected and a diagnosis occurs, the sooner someone living with the disease and their family members can make financial and legal plans and live a more purposeful life. Now is the time
partnership with area agencies on aging related dementia will increase from
available to us to help support family
(AAA).
650,000 to 750,000, a 15% jump in just
caregivers. For example, there is work
to urge your elected representative to
four years. And less than half of them
being done to educate physicians
support early detection and diagnosis
education campaign focused on early
have been diagnosed. Plus, less than
through the 2017 Alzheimer’s Clinical
of Alzheimer’s disease and other
detection in partnership with the Area
half of those diagnosed are aware of
Care Guidelines developed by the
dementias. Become an advocate by
Agency on Aging.
their diagnosis – that is unacceptable.
California Department of Public
going to alz.org/advocate.
2. Propose a statewide public
ers Interested in helping oth Are you computer
?
literate?
centralcoastseniors.org
e in the areas of d tu ti p a n a ve a h Do you nior issues? se d n a , ce n ra su in Medicare, health
ring? s in a year voluntee
hour Can you spend 40
Join Us! Sponsored by the Central Coast Commission for Senior Citizens with a grant from Center for Medicare & Medicaid Services.
Obispo and
Santa Barbara Counties
805-928-5663 1-800-434-0222
528 South Broadway, Santa Maria, CA 93454
This publication was supported by the Central Coast Commission for Senior Citizens with the financial assistance, in whole or part, through a grant from the Administration for Community Living.
7
HICAP provides free and unbiased assistance for people on Medicare
San Luis
Lee Central Coast Newspapers / Alzheimers Awareness Guide / June 2018
Volunteers Needed
Diagnose & Detect
Dangers of Denial
by Marcy Maler / MA. MFT Associate, Educator & Care Specialist
8 June 2018 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
Alzheimer’s disease is the sixth leading cause of death in this country. An estimated 5.7 million Americans have the disease and one in three families are touched by it. Yet Alzheimer’s disease and other related dementia very rarely appears in obituaries or even on death certificates. The disease, experts say, is one of the few that still carries such a stigma that families and patients often refuse to acknowledge it or call it by a name. As a consequence, some people with dementia have been put in dangerous situations. They are allowed to live alone, for example, when they can no longer cook or care for themselves. Families have been torn apart when some members refuse to accept a diagnosis in a parent, or help with his care. It may feel better to overlook problems and hurtful situations to protect our emotions and decrease a fear about the future. But is it better to deny
the existence of dementia in a family member? Accepting that memory loss is creating problems in everyday life can be painful and difficult because the notion of becoming a caregiver is too much to bear. We may make excuses to lessen our pain: “His bad day was just because of the unusual circumstances today,” “She will remember tomorrow, once she is rested.” Or perhaps, it could be the promise you made of never putting your loved one in a nursing home. If you assume that your loved one doesn’t have dementia, you won’t have to deal with it. When family members downplay their loved one’s level of functioning and care needs, they also put him at a higher risk of danger. Although it is possible to deny what we find unpleasant or frightening, when denial exists there runs a risk of getting improper care. It is important to have a realistic perspective about your loved one’s illness to effectively support
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your loved one as well as yourself. Denial, a risky business: An important consequence of denial is neglecting your loved one’s safety. One example may be misusing or mismanaging prescriptions. Using a weekly pill dispenser makes it easier for the average person to properly take medications. However, for a person living with cognitive impairment, even though the medication is organized, it will not help them remember where the dispenser was placed and recognize the need to take the medication as prescribed. Despite your efforts, you may notice the medication was taken too often or not at all. There comes a time when medication needs to be monitored and given by a second party. Beyond taking medications safely, is your loved one’s home safely navigated by an aging person with compromised mobility and perception? Does she know how to call you if she falls and can’t get up? Will your loved one turn off the stove after use? Remember to unplug the iron? Remember how to get home when driving or on a walk? There are so many logistical aspects to consider to ensure the safety of a person with cognitive impairment. Denial will impact family dynamics: Those in denial will accuse the accepting family member of overreacting and refuse to assist in caring for the loved one; those accepting the reality will feel burdened by doing all the care. Frustration for the person with the disease can become overwhelming, in that he doesn’t receive the support he needs from his family because they don’t acknowledge that the disease is interrupting activities of daily life. Uninformed, those in denial may truly believe that their loved one can re-learn to make her own meals or dress herself. The entire family will be stressed, the patient will not receive adequate care, and relationships will be torn apart. It happens in the best of families: Unfortunately, shame is often associated with a dementia diagnosis. Having noticed that a husband or
wife has progressive memory loss, a spouse may choose not to share it with others. In doing so, the couple may face isolation and further difficulties in providing proper care. In fact, were they to seek out the many educational opportunities and support groups that are available, they would realize there is nothing shameful and they are not alone. At the onset, a spouse may be able to provide the needed care, however, as dementia progresses so does the intensity of caregiving needs. Increasing daily supervision is needed to avoid the risk of accidents around the home. Gas and fire dangers arise as reason and judgment decline. Continuous denial of this decline creates greater dangers to the patient. Beyond the safety issues mentioned above, the failure to address symptoms with proper medications can make the patient’s life extremely stressful and uncomfortable. While it is normal to be fearful of a dementia diagnosis, don’t let it overrule logical thinking. Address your fears; allow yourself to approach denial in a kind, gentle, and calm way to minimize frustrations, danger, and anger. Acceptance and dementia education will ensure proper support for your loved one. Although one tends to gravitate toward ignoring the 10 signs of dementia, when a loved one exhibits dementia-related behavior it is best to muster up the emotional strength to get a medical evaluation right away. Remember, acceptance gives you and your loved one time to educate yourselves and prepare for the future, allowing your friends and family to adjust to the situation together. Understanding the progression of the disease will allow you to face it with strength and compassion. The sooner friends and family recognize and accept that their loved one will need support in caring for themselves in the near future, the better care they will be able to provide. Dementia education will be your closest ally.
Diagnose & Detect
6 Tips for Approaching Alzheimer’s If you notice any of the 10 Warning
b. “I’ve noticed a few changes in your
Signs of Alzheimer’s in yourself or
behavior lately, and I wanted to see if
someone you know, don’t ignore
you’ve noticed these changes as well?”
them. Early detection makes a world
c. “Lately I’ve been considering my
of difference, and so does the way
own long-term care plans, and I wanted
you approach the conversation with a
to see if you’ve done any advance
family member or a friend. If you notice planning you can share with me?” a pattern of memory loss or behavioral
4. Offer your support and
issues that are affecting one’s ability
companionship – Seeing a doctor to
to function, it’s essential to talk
discuss observed warning signs of
about it so they can be evaluated. The
Alzheimer’s may create anxiety. Let
Alzheimer’s Association offers these
your family member or friend know
tips:
that you’re willing to accompany them
1. Have the conversation as early as
to the appointment and any follow-up
possible – Ideally, it’s best to talk about
assessments. Offer your continuous
the Alzheimer’s warning signs with a
support throughout the diagnosis
family member or friend before they
process.
even occur, so that you can understand
5. Anticipate gaps in self-awareness
how someone would want you to
– It can be the case that someone
approach them about it. However,
showing the warning signs of
many people aren’t planning for
Alzheimer’s is unable to recognize
noticing signs of dementia, start a
to navigate confusion, denial and
conversation as soon as possible, while
withdrawal, as people may not want to
mental functioning is at its highest and
accept that their mental functioning is
before a crisis occurs.
declining.
2. Think about who’s best suited
6. Recognize the conversation may
to initiate the conversation – There
not go as planned – Despite your best
might be a certain family member,
intentions, a family member may not be
friend or trusted advisor who holds
open to discussing memory or cognitive
sway. Consider asking this person to
concerns. They may get angry, upset,
step in and plan around how to have
and defensive or simply refuse to talk
the most supportive and productive
about it.
conversation. 3. Practice conversation starters –
Unless it’s a crisis situation, don’t force the conversation. Take a step
The following phrases can help broach
back, regroup and revisit the subject
the conversation.
in a week or two. If they still refuse to
a. “Would you want me to say
get help, consult their physician or the
something if I ever noticed any changes Alzheimer’s Association for strategies that may help.
This institution is an equal opportunity provider and employer. A Non-profit, Continuing Care Retirement Community • Lic# 425802103 COA #152
9
in your behavior that worried me?”
Help with Daily Living Activities Individualized Care Delicious Meals Specialized Activities and Events Excercise Program Secure Environment Warm Family Atmosphere
Lee Central Coast Newspapers / Alzheimers Awareness Guide / June 2018
Alzheimer’s before it happens. If you’re those signs in themselves. Be prepared
Diagnose & Detect
A Change of Plans: The gift of an early diagnosis by Ashley Costa / Executive Director, Lompoc Valley Community Healthcare Organization
10 June 2018 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
There is no prevention, treatment, or cure for Alzheimer’s disease and related dementias. As a result, many people question why they should seek a diagnosis if experiencing occasional memory lapses or confusion. There are many reasons to explore the cause for these early symptoms. First and foremost—it may not be a progressive dementia such as Alzheimer’s at all. The symptoms might be the result of a treatable condition that can be reversed or controled, such as depression, hyperthyroidism, dehydration, stress, or sleep apnea. However, if the diagnosis is progressive dementia, knowing this will provide one with the opportunity to prioritize plans for the future and consider options that will improve the quality of life for oneself and his loved ones throughout the progression of the disease. A diagnosis doesn’t mean that
all prior plans must be discarded, but that they may need to be adjusted. A person diagnosed with progressive dementia will live, on average, another four to six years. An early diagnosis may allow a person to fulfill some of her “maybe someday” dreams during the early stages — perhaps fulfill that once-in-a-lifetime adventure, go to a live sporting event they have wanted to see that had been put off until the “right” time; or perhaps make more opportunities to spend quality time with loved ones. Importantly, the diagnosed person will have opportunities and choices while still healthy. Knowledge of a progressive dementia diagnosis may also allow a person to participate in research for treatment or a cure. The Alzheimer’s Association offers TrialMatch, a service that connects diagnosed people and
healthy participants to clinical trials for research. Participants in research trials receive high quality care and their participation can give them a sense of purpose and meaning, knowing that they are contributing to better treatment or a future cure. For those who are still working, being able to discuss one’s diagnosis with an employer may save one’s job or provide retirement without losing benefits. If a person experiences memory loss and confusion on the job and there is no explanation for the change in performance, it may result in job loss. However, a diagnosis of progressive dementia may provide ADA protections so the cognitive handicap can be accommodated and the person can continue to work for a longer time. Once retirement is necessary, he will be eligible to apply for Social Security benefits. Without a diagnosis, those benefits would not be available. An early diagnosis will allow the diagnosed person to make decisions about financial and legal matters such as wills, advance healthcare directives, naming a power of attorney, and developing a plan for financial stability. Having these practical arrangements in place ensures that the diagnosed person can make her wishes known and are carried out, and that her loved ones are not left trying to guess what she might have wanted. It also enables the family to plan for the long-term care of the diagnosed person. Together, patient and caregiver may plan for future care, including the selection of a residential care facility. Further, the diagnosed person may connect with programs through Aging and Adult services or the Veteran’s Administration, which can help identify financial resources that may be available. Education and support are key to creating the best circumstances for those living with progressive dementia. The sooner one is aware of his
diagnosis, the sooner he can begin to build a support team of family, medical professionals, and friends or begin to learn about Alzheimer’s. Online support and education are available 24-hours a day at alz.org and at the Alzheimer’s Association Helpline, 1-800-272-3900. In addition, many communities have in-person classes, support groups, and engagement opportunities for people in early stages. Education is especially valuable to caregivers as the disease progresses. Educational classes can help caregivers gain an understanding of the physical and behavioral changes that may occur throughout the stages of the disease. Classes will also help the caregiver develop skills for better communication and caregiving techniques that will improve the quality of life for the afflicted loved one and provide greater peace of mind for the caregiver. Participation in a support group can give the caregiver practical information from others who share similar caregiving experiences, thus relieving the feelings of isolation that can result from long-term caregiving. Whether online or at a local meeting, the sense of community that develops in a support group can remind a caregiver that he is not alone in his journey. Learning that a person has progressive dementia helps to start planning a care team and develop a strategy for the future. By sharing the diagnosis with others, it can destigmatize the illness and create a larger circle of support. Close friends are given the opportunity to learn about the illness and continue to offer friendship and support to both patient and caregiver. When the patient’s health-care team is made aware of the diagnosis, it can offer the best medical care based on the individual’s changing needs. See DIAGNOSIS on page 11
Diagnose & Detect
What it means to be a caregiver by Tina McEvoy/ RN
DIAGNOSIS
progresses. Despite the dread of having an early diagnosis that might confirm one’s greatest fear that indeed, it is a cognitive problem, once the diagnosis is made it allows the diagnosed person to give the gift of shared planning to one’s care partners — eliminating any uncertainty in making plans and future decisions on behalf of the afflicted person.
From page 10 Having a plan in place can be a great comfort to anyone living with a long-term chronic disease. Once plans are prioritized and the person with dementia has been able to participate in future planning, it will be up to the caregiver to make new plans and adjust for the challenges of unforeseen circumstances as the disease
nature of dementia caregiving, the caregiver may not recognize the point where the toll grows too high and exceeds safety levels. Caregivers should be aware of all the stresses they are under. There are physical stresses related to the exertion of providing assistance with personal needs, hygiene, housekeeping, lifting and cleaning. There are financial stresses given that dementia costs are estimated to be three times as much as other conditions. There are environmental stresses. The home must be modified to attend to the unique needs of dementia patients, and companion caregivers may find themselves living in uncomfortable settings. There is also the social stress, given that dementia leads to isolation, and the caregiver often becomes
isolated too, without the benefit of the companionship that existed in the relationship with the patient prior to the onset of dementia. And finally there is emotional stress, of juggling multiple responsibilities and suffering the effects of social isolation while experiencing every stage of grief at once, every day, month after month … with no end in sight. Given the prolonged extent of caregiving, the high demands of dementia care and the stresses caregivers live under, it is no wonder that dementia caregivers are among the most stressed people in the world and have elevated risks of developing certain health conditions, such as high blood pressure, anxiety, shingles, heart attack and, most ironically, Alzheimer’s disease.
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Home Health: (805) 543-2244
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realizing that this is the very start of a caregiving relationship. Some caregivers work as a team: mother and daughter assisting Dad; siblings working together to assist Mom. But in the majority of cases there is a single caregiver who takes over most care responsibilities. As dementia progresses, patient’s needs become more personable and more time consuming. Dementia often causes changes in personality and communication skills that caregivers find unsettling. Physical and emotional needs become more demanding and a caregiver will need to utilize help from external resources, such as family members, friends, professional caregivers and community organizations. While a family caregiver may be able to manage complete assistance in the early stages of dementia, in the later stages it is not possible to provide care alone without serious safety risks for both patient and caregiver. Identifying exactly when care responsibilities become too demanding is one of the biggest challenges for caregivers of dementia patients. Dementia generally progresses gradually, in small increments, over the course of several years, as do the tasks of caregiving. Given the incremental
Lee Central Coast Newspapers / Alzheimers Awareness Guide / June 2018
Caregiver: a person who gives care. It is such a self-descriptive, widely used and recognizable term. Have you ever thought about what it really means to be a caregiver? More specifically, what does it mean to be a caregiver for a loved one with dementia? Family caregivers are those who step in to assist in performing necessary tasks that a loved one is no longer able to perform alone. These tasks vary, including assistance with practical matters, such as handling insurance, paying bills or coordinating with family and friends; assistance with physical care — bathing, dressing, eating and taking medication; and assistance with emotional care — facilitating activities, providing companionship and love. Family caregivers may provide hands-on, direct care, or long-distance supervision and managerial care — yes, long-distance caregivers are caregivers too! In dementia care, the need for assistance begins long before fullblown dementia sets in. A patient with mild cognitive impairment (MCI) or in the early stages of dementia, although able to make decisions, may need help with organizing schedules, monitoring finances and keeping a social calendar. A close relative, most often a spouse or adult child, may offer help, not fully
Diagnose & Detect
12 June 2018 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
CARING FOR ALZHEIMER’S AND THE ELDERLY IS HARD. DON’T NEGLECT TAKING CARE OF YOURSELF AS WELL.
Introducing our Life Enrichment Day Program for the elderly and those who care for them. Our program is designed to help enrich the lives of the elderly while offering caregivers a respite from the demanding responsibilities of daily caregiving. It is ideal for folks who need some support caring for a family member, especially if they are working. Be it a day, several days a week or as long as a month, we’ll take good care of your loved one so you can take care of yourself. From experience we know all caregivers could use a little break now and then and our program is here for you.
All our elderly care services and amenities are included in this program. Transportation to and from Friendship House 24-hour supervision Medication management Social and therapeutic activities Shower/grooming/incontinence assistance Full service beauty salon and barber shop
FRIENDSHIP HOUSE since 1978
“It ju st fee ls rig ht ”
Nutritional meals and snacks Health monitoring by Registered Nurse specializing in Alzheimer’s and dementia care Flexible Hours Monday-Friday 7am -7pm Saturday 9am-5pm
Alzheimer’s and Dementia Care 880 Friendship Lane Solvang, CA 93464 805.688.8748