Providing education, support, and resources
to guide you on your dementia care journey
Serving Alameda and Contra Costa Counties in Northern California
ARTICLES
Holiday Tips for the Dementia Caregiver
Cognitive Health Assessments
Home Health Care vs
In-Home Care
Family Matters
Cognitive Health Assessments:
What to do and where to go when dementia is suspected
-Debbie Emerson, M.S., C.D.P.
BLOGS
- Debbie Emerson, MS, CDP
- Gia Barsell, CDP
Holiday Tips for the Dementia Caregiver
-Gia Barsell, C.D.P.
Have you ever worried whether some of the memory challenges you or a loved one are experiencing are “normal?” Could they be a sign of something else? As we age, our brains and our bodies undergo many changes. We may experience instances where we process information more slowly, or we may have trouble recalling names or dates. These can be examples of typical age-related changes. But what are the indicators that these changes may be due to something more serious such as mild cognitive impairment or even dementia? When might it be time to visit the doctor for an evaluation? And what type of physician should you see? An early diagnosis is always best. It allows for more control, more time to prepare, and greatly increases care and treatment options. INITIAL SCREENING: The Primary Care Physician Since a person’s own doctor typically has a thorough understanding of their medical history, the primary care physician is one of the best places to start if cognitive decline is suspected. Medicare’s Annual Wellness Visit includes a simple cognitive assessment; thus most PCPs are familiar with the screening and referral process. Please note that the patient or family member can always request a cognitive assessment. HIPAA allows the patient’s physician to share information and discuss the patient’s case with family members as long as the patient does not object. It’s important for family caregivers to establish early on that they are members of the patient’s care team. Alternatively, some patients/families may choose to access the services of their healthcare system’s neurology department as a first step. Physical Exam. The physician will conduct a physical exam and review the patient’s medical history, medications, and mood. The patient’s reflexes, movement, coordination, balance, and senses will also be examined. It’s important to rule out any medical conditions that may be contributing to cognitive or behavioral issues. Cognitive Screening. There are a few standardized exams that a primary care physician may use to assess a person’s memory, judgment, and ability to understand language and visual information. The screening tools used by most primary care physicians include the MoCA (Montreal Cognitive Assessment), GPCOG (General Practitioner Assessment of Cognition), MMSE (Mini Mental Status Exam), and SLUMS (Saint Louis University Mental Status Exam). The MoCA tends to yield the most accurate results and takes about fifteen minutes to administer. It should be noted that the MMSE does not assess for Mild Cognitive Impairment (MCI). Informant Interview. Mild cognitive impairment and dementia impact a person’s ability to function independently. Ideally, the physician should interview a close family member or friend to determine if the person has had more difficulty than they previously did a few years ago with recent (short-term) memory, memory for recently held conversations, word- finding ability, handling finances, medication management, and the ability to use transportation. It’s also important to identify any changes in personality or mood. Informant Interview. Mild cognitive impairment and dementia impact a person’s ability to function independently. Ideally, the physician should interview a close family member or friend to determine if the person has had more difficulty than they previously did five to ten years ago with recent (short-term) memory, memory for recently held conversations, word-finding ability, handling finances, medication management, and the ability to use transportation. It’s also important to identify any changes in personality or mood. DIAGNOSIS: The Specialists Referral. Should an in-office screening indicate a more serious cognitive decline, the healthcare provider can make a referral to a geriatric physician, neurologist, neuropsychologist, or other medical doctor who specializes in diagnosing and treating individuals with dementia. Sage Dementia Consulting can also suggest specialists in the San Francisco East Bay Area should further assessment be needed after the initial screening. Memory Clinics. If available within their healthcare system, a person may also be referred to a memory clinic or center. Clinics typically use a team approach to care that includes comprehensive medical and neurological assessments, case management services, resources, and support for both the caregiver and the patient. Examples of local healthcare systems that have memory centers include Kaiser Permanente, UCSF, and Stanford-Palo Alto. Neurological Testing. A complete diagnostic workup will include comprehensive cognitive and physical evaluations. The results of these preliminary exams may indicate further assessments that can include biomarker (blood) testing, genetic testing and/or screening, lumbar puncture, CT scans, and amyloid PET scans. The neurological testing is customized for each patient and the type of dementia suspected. The costs of all these tests are covered by medical insurance. Neurological testing is the most effective way to assess the functioning of a person’s brain and nervous system. The results of the evaluation can indicate dementia or mild cognitive impairment as well as help identify the suspected underlying cause of the dementia such as Alzheimer’s, vascular disease, frontotemporal lobe dementia, or Lewy Body dementia. The results can also determine the areas of greatest deficit such as memory, language (speaking and understanding), visuo-spatial skills, attention, processing speed, etc. Knowing the most likely cause and what abilities are impacted is essential in helping to guide appropriate care and treatment. For more information about neurological testing, visit the Cleveland Clinic website at https://my.clevelandclinic.org/health/diagnostics/4893-neuropsychological-testing-and-assessment Care Plan. The results of the neurological testing can provide a detailed picture of the patient’s cognitive strengths and weaknesses, a determination of their independence, and how dementia is impacting their daily life. This knowledge will enable their healthcare providers and family caregiver(s) to develop a personalized plan of treatment and care. What’s Next? It can be hard to know what to do next when one receives a diagnosis of cognitive impairment. How to cope with emotions? With whom should this information be shared? How will friends and family react? How will this change daily life and activities? What can be done to prepare for what lies ahead? Sage Dementia Consulting is here to help you with resources and support, and we’ll be addressing these questions and more in our upcoming blogs.
Home Health Care vs Personal Home Care?
There IS a difference
-Debbie Emerson, M.S., C.D.P.
One of the most challenging aspects of being a care partner is the feeling that you’re in this alone, that no one else is helping you. Having a support team in place is essential for the care of your loved one and critical to your own well-being. And, while the lion’s share of the care team tends to be comprised of your family and friends, there are times when it may be necessary to seek professional in-home support. There are two broad types of in-home care services and it’s important to understand the difference. Home Health Care. The key word here is health. Home health care is specialized medical care that is ordered by a physician and is administered by trained healthcare professionals such as nurses, physician assistants, physical therapists, occupational therapists, medical social workers, dietitians, etc. Most home health care is ordered after a hospital stay due to an illness or injury. Home health care is covered by Medicare and most insurances. These services can continue as long as the patient is homebound and under the care of a physician who certifies that continued treatment is required to maintain the patient’s current condition and/or to prevent decline. For more information go to: www.medicare.gov/coverage/home-health-services You can obtain lists of home health agencies in your area from a hospital social worker/discharge planner, or possibly your physician’s office. It is your right to choose the agency you prefer. Medicare’s Care Compare is a very helpful online tool for evaluating home health agencies: www.medicare.gov/care-compare/ I wouldn’t even consider hiring a home health agency unless I first checked their reviews on this site. Home Care/Personal Care Caregivers hire in-home care for a variety of reasons, including assistance with basic functional, non-medical needs such as bathing, dressing, grooming, dining, medication reminders, shopping, light housekeeping, companionship, and shopping. In addition, hiring in-home care for caregiver respite can be a great option for those who need a break from their caregiving responsibilities. In-home care can provide temporary relief for the caregiver, allowing them to take a break and recharge while ensuring their loved one is still receiving the care they need. This type of in-home care is also referred to as “custodial” care. Patients must pay out of pocket for services and, unfortunately, it’s expensive (see below for some options for paying). When I was caring for my mother several years ago it was necessary for me to supplement her care after a hospital discharge. My mom was not happy with this plan—I was the only one she trusted. She did not want any “strangers” coming into her home, and I must admit that I had the same concerns: What if they’re scammers or steal from us? What if they abuse my mom? How do I know I can count on them to be here when we need them? Are they competent in providing care? Convincing my mom that it was necessary to bring in someone to help with her care was not easy. I finally relied on one of my tried-and-true tactics of persuasion: Doctor’s orders. She still was not happy, but she gave in, and I was able to deflect the “blame.” I had overcome the first, and possibly biggest, obstacle to hiring in-home care. But now I was faced with the equally daunting task of figuring out where to begin. Although you may have been reluctant to do so in the past, now may be a good time to investigate the possibility of hiring in-home help. Agencies are now implementing stricter infection control precautions for their employees – they are just as concerned about safety as you are. Do your homework! Of course, your loved one’s safety and security is of utmost importance when bringing someone into the home to provide care. With the realistic fear of contracting all of the viruses that seem to be with us to stay, the risks are even greater. So, it is especially important now that you do your due diligence and properly research agencies and/or private contractors prior to hiring. These days, many of us rely on online search engines such as Google to find goods and services. While at first this may seem like an easy, efficient strategy, the problem is that there are thousands of home care options with ads on the Internet. Sorting through them can be overwhelming. And, as with all service providers, there are some that are excellent and reputable, but there are some that are not. It’s easy to fall prey to slick marketing campaigns, especially when you’re in a crisis situation and frantically looking for help. A good starting point would be to ask for recommendations from trusted friends, family, and medical professionals. They may be able to direct to you a local franchise of a national company (ex., Senior Helpers, Comfort Keepers, Visiting Angels, Honor, etc.) or to a local privately-owned agency. Your community senior center is another excellent source for recommendations. Senior centers may also maintain registries of independent caregivers. Every county in the US has an agency that provides comprehensive resources and services to elderly and disabled persons and their caregivers. These services are typically a part of the county’s social services department. The names of the agencies may vary by geographic location. For example, CityServe, which is located at the Senior Center in Pleasanton serves as Alameda County’s local USAging agency. To find your area’s agency, go to https://eldercare.acl.gov/Public/Index.aspx and type in your zip code. A comprehensive, reputable guide for answering all your questions about in-home care can be found on the Family Caregiver Alliance website www.caregiver.org/caregiver-resources/caring-for-another/caring-at-home. This non-profit organization provides Facts and Tip Sheets specifically dedicated to hiring in-home care, including how to evaluate providers and how to work successfully with home care services. After you’ve reviewed the information from the Family Caregiver Alliance and once you have a couple of recommendations for home care options from reliable sources, contact the agency or individual to set up a phone interview to begin the process of assessing whether this option is a good fit for your needs. I’d like to add some tips: • Check out the agency’s website to learn about the steps they are taking to ensure the safety of their clients and employees. • If your loved one has dementia, ask about the agency’s protocol for training their caregivers in best practices for addressing the needs of those living with dementia. • When hiring personal care for a dementia patient, sooner is better than later. I recommend that you start the process of bringing in a paid caregiver while your loved one is in the early stages of dementia when they may be more open to having someone other than you stay with them. The Family Caregiver Alliance has an excellent article that addresses the topic of resistance to this type of care: Introducing in-home care when your loved one says ‘no.’ • Once you’ve hired a paid caregiver, if for any reason you do not feel comfortable with the care they are providing, it is your right and responsibility to terminate their services. • It may be tempting to hire the most cost-effective agency or individual, but if the hourly rate of one of your options is considerably below market value, beware! Remember, you get what you pay for. Paying for services As I mentioned above, Home Health Care is the only in-home service that is covered by Medicare and most other insurances since it is deemed medically necessary by a physician. Personal/home care is usually paid out of pocket since it is considered non-medical care. I’ll be honest with you – it’s expensive. I can’t really give you accurate costs since rates vary greatly depending on type of services, time of day, and geographic location, but the range is somewhere between $30-45/hour, usually with a 2-4 hour minimum. Most people rely on savings, annuities, or reverse mortgages to cover costs. However, there may be other options that can help: • Long-term care insurance – if your loved one has a policy, check to see what types of home care services are covered and what the restrictions are. • Medi-Cal/Medicaid’s IHSS Program (In-Home Supportive Services) is for those who qualify based on financial need. Check your county’s Medi-Cal office to see what services are available in your area. (Note: Medi-Cal is California’s version of Medicaid) • Veteran’s disability programs such as Aid and Attendance benefit may cover some costs. If your loved one is a veteran, an accredited Veteran’s Service Organization can assist you, free of charge, in determining eligibility for benefits. https://www.va.gov/pension/aid-attendance-housebound/ • Local USAging.org agencies may have low-cost or sliding scale home care. Check your county’s USAging to see what services are available to you. https://eldercare.acl.gov/Public/Index.aspx • PACE (Program of All-Inclusive Care for the Elderly) provides comprehensive home care for low-income seniors, with a goal of enabling them to remain in their homes. For PACE programs in your area, visit www.npaonline.org/pace-you/pacefinder-find-pace-program-your-neighborhood An added bonus Many of us are uncomfortable bringing in “the strangers,” as my mom called them, to provide intimate care for our loved ones. That concern is completely understandable. But, with your priorities being the health and safety of your loved one and your own well-being (don’t minimize the importance of this!), it may be one of the best options. Think of it this way: Hiring extra care may prevent a hospitalization or a trip to the emergency room. That, in itself, is well-worth not only the financial cost, but any emotional discomfort. And you may be pleasantly surprised to find that your paid caregiver may turn out to be a caring and compassionate addition to your team.
Family Matters
Debbie Emerson, M.S., C.D.P.
• I’m the only one my husband trusts to provide care. • My family is scattered all over the country – how can they help with care when they’re so far away? • No one else can possibly understand what I’m going through. • My siblings can’t help me care for our father, but they’re the first to criticize what I’m doing. • I don’t trust anyone else to provide care for my mother – they may not do things the way I’d like; I’ll just have to fix the mistakes they make, so I might as well do it myself. I’ve often heard these statements and others like them from family caregivers. Without a doubt, one of the most challenging aspects of providing care to a loved one is trying to work together with family members. The demands of caregiving can be staggering, but when you include the bickering and disagreements that tend to surface when family members interact, the task can be overwhelming. When I was caring for my elderly mother in the last few years of her life, I created the false narrative that her care was my sole responsibility. Big mistake! In so doing, I found that not only did I assume an excessive amount of responsibility that would ultimately impact my own health, but there were two other critical factors that I failed to consider: (1) I was depriving Mom of receiving care from other family members and benefiting from their unique abilities and companionship, and (2) I was denying family members the opportunity to create positive memories and strengthen their relationship with Mom at the end of her life. It took me awhile to realize that the key to successful caregiving was putting aside our differences and working together as a family unit to provide quality care for our loved ones. Lessons learned. I’d like to share with you some of the lessons I’ve learned about optimizing family cooperation in the care of a loved one. • When one person establishes herself as the primary caregiver, family members may assume that their help isn’t needed or wanted. So, as primary caregivers, we need to ASK for help when we need it – we can’t expect others to be mind-readers or anticipate our needs. Establish from the beginning that everyone’s help is necessary to best meet the needs of your loved one. And, remember that it is important to steer clear of the cycle of guilt and anger when asking for help. • Communicate with everyone, every step of the way. Discuss and establish roles and responsibilities. Be willing to compromise. Avoid exclusive alliances; don’t ignore “difficult” family members. Document, document, document—having a written record of all information and communication relating to the care of your loved one will serve you well. • Coordinating care can be cumbersome. Since each person on your team may have his/her own system of task management, it’s important to find a simple organizational strategy or tool that everyone feels comfortable using. There are many good computer apps that can make coordination and communication easier, but if members of your team are not computer literate, you may need to use some of the more traditional strategies such as files and notebooks. Whatever tool you use, just be sure that everyone on the team is committed to using it. • Everyone responds differently to caring for an elderly or chronically ill loved one, especially if the there is a dementia diagnosis. It’s not uncommon for many to react with denial, discomfort, and/or withdrawal when faced with interacting with one who is in failing health. When asking for help, we need to be sensitive to what others are able to handle. Some family members are best suited to contributing in areas that don’t require direct care. • Our expectations need to be realistic. We may expect that other family members demonstrate the same type of commitment that we have. This distorted belief can lead us to judge, and judging destroys relationships. Instead, focus on what type of help other family members are willing and able to provide – it can range from handling complex financial or medical situations to providing emotional support and companionship. • It’s important to recognize family members for what they are, not what we want them to be. Our baggage from childhood doesn’t just neatly disappear in adulthood; the family dynamic from years ago has a way of seeping into adult interactions. And, now that many families include stepchildren, half-siblings, former spouses, etc., interactions can be even more complex. The key to success is to always focus on what’s best for the loved one who needs care and avoid power struggles. Most importantly, try not to let inheritance disputes tear your family apart. The shared caregiving experience in which your loved one’s needs become the top priority can make your family unit stronger. When you are able to accept and respect differing perspectives and put aside the rivalries and grievances from the past, you’ll be able to view your family members as allies, not adversaries. Providing care for an elderly loved one is full of joys and sorrows. When your family is able to work cooperatively as a team with a common goal, everyone benefits: Your loved one will get the best care possible; as the primary caregiver, your role will be more manageable; and your family members will be able to experience the satisfaction and personal fulfillment that comes with caring for another. And, after your loved one has passed, hopefully this family bond will continue to grow as you support each other during the grieving and healing process and beyond. Check out some excellent articles and resources: Caregiving with Your Siblings Family Caregiver Alliance https://www.caregiver.org/print/22232 Holding a Family Meeting Family Caregiver Alliance https://www.caregiver.org/holding-family-meeting Stop Competing for Caregiving Control AARP https://www.aarp.org/home-family/caregiving/info-2014/caregiving-sibling-rivalry-jacobs.html
Caring for someone living with dementia is hard on a regular day. Add in the stress of preparing for the holidays and it can feel overwhelming to the point of not wanting to deal with the holidays at all. Here are some tips to make the experience enjoyable and stress-free for both the caregiver and the person living with dementia.