Alzheimer's Disease
TSZ Law • June 6, 2019
What is Early-onset Alzheimer’s Disease?
According to the Alzheimer’s Association 5% of the more than 5 million Americans living with Alzheimer’s disease have younger-onset also known as early-onset.
Many of these people are in their 40s and 50s. In the United States an estimate of approximately 200,000 people are diagnosed with early-onset Alzheimer’s Disease.
To receive an accurate diagnosis at this age can be difficult. The medical profession can overlook or rule out Alzheimer’s dise ase often relating the symptoms to stress, menopause or depression , w hich then leads to misdiagnosis and treatment. It is also very difficult to diagnose because this disease affects each person differently and symptoms can vary.
The Alzheimer’s Association suggest if you are having memory problems to write down symptoms of memory loss or other cognitive difficulties to share with your health care professional. Also, have a comprehensive medical evaluation with a doctor who specializes in Alzheimer’s Disease. This will involve a medical exam and possibly cognitive testing, a neurology exam and/or brain imaging.
Doctors don’t understand why this disease strikes at such a young age in some people. The Alzheimer’s Association says that if there is a family history that doesn’t necessarily mean you will develop the disease yourself. However, research does show that those who have a parent or sibling with Alzheimer’s Disease are more likely to develop the disease.
As a Geriatric Care Manager, I have had the privilege to work with people of all ages living with Alzheimer’s Disease and other dementias. But what I have noticed is that there appears to be more being diagnosed with early-onset. This is very life altering for both the person living with the disease and the family. Often, they still have children living at home, work fulltime, and have a spouse working fulltime. This is just not the way things are supposed to be. There will be grieving and questions as to what changes l ie ahead , b ut with the diagnosis in pl ace the learning process can begin, and plan s can be put into place. This takes time because no one imagines this c ould happen to them when they are so young.
Learning everything you can early on is the best advi c e you can receive. The more you know the more you can preplan for what will lay ahead. Educating your spouse and children/family as much as possible is also very helpful because they will be your caregivers. The bes t approach to this disease is a team approach. W ith the right help and guidance, you can get through it.
C ontact your local Alzheimer’s Association for a referral and to answer any questions or concerns you may have at 1-800-272-3900 for the 24/7 Helpline. These people are trained professionals who are a great help.
This time of year is usually joyful and filled with expectations. Holidays can also be stressful for both caregivers and those living with dementia. Both caregivers and those living with dementia will often feel a sense of loss of what was and never will be again. Since the caregivers have the ‘healthy brain’ it is up to them to make the adjustments and modifications according to the needs of their loved one. You will want to avoid blinking lights and real candles. Play their favorite music, keep celebrations quiet and relaxed, plan gatherings at the best time of day for them, stick to daily routines and keep outings brief. If your loved one lives in a facility, consider holding a small family gathering at their home/facility. Familiar surroundings are so important. It is helpful to visit with family and friends ahead of time regarding any changes. Give them some tips on what may work well during their visit and what changes have taken place with your loved one. Think about making new traditions with your loved one and encourage family to be a part as well. Whether your loved one still lives with you or is in a care setting, include them in things that they remember. My mother has Alzheimer’s and is no longer able to send out greeting cards on her own, but we will spend an afternoon going through her address book and I write in the name, address, and have Mom sign her name. She is always so proud when we finish and have a nice little stack of cards ready to be mailed. Don’t forget to take time for you, as the caregiver. If your loved one lives with you, be sure to seek some respite time to be on your own…. spa day, shopping or take a nap. Be ‘ok’ asking for help and be ‘ok’ with doing less, which will create more, in the end for both you and your loved one…less stress and more time to make new memories.
With our aging population, we are finding one of the biggest issues is that their social circles begin to shrink as the years go by. Friends often move or pass away. Other areas that affect their social circle is limited mobility, hearing and vision loss and other losses and struggles often related to aging.
So many times in our lives we experience many forms of loss which then can often become some form of grief: moving away from home, children growing up and leaving home, loss of a job, loss of friendships, the death of a loved one, loss of what was and never will be again
Imagine getting that awful phone call from a hospital saying your loved one is in the ER following a car accident or some other type of traumatic event.
According to an article from the National Care Planning Council, April 2, 2019, “Dehydration, failure to consume adequate fluids to replace those that are lost, is a major problem for the elderly. About 10 percent of all hospitalizations are directly attributable to dehydration. Seniors are particularly susceptible to becoming dehydrated. It can even result in death if severe enough.”
According to a New York Times article written by Jane E. Brody, “Falls are the leading cause of fatal and non-fatal injuries among older people. Every 19 minutes in this country, an older person dies from a fall.”
Jolene Brackey tells a story that helps us learn some ways to better approach a person living with Dementia. The book, “Creating Moments of Joy “is a story reminding us to be more like the sun: “There was a sun and a cloud in the sky, and they were fighting over who was the most powerful and the strongest. There was a little boy walking on the sidewalk and the cloud said that whoever gets that jacket off the little boy wins. So, the cloud said, “I’m going first.” The cloud floated over the boy and started to blow. He blew and he blew, trying to blow the jacket off the boy. What did the little boy do? He held on even tighter to the jacket. The cloud blew and blew. Eventually, the cloud lost all his energy. He was tired and couldn’t blow anymore. He turned to the sun and said, “All right, I give up. Give it your best shot.” The sun didn’t move. He just waited and warmed up. He radiated his warmth. He was very patient. The little boy started to sweat. The little boy thought, “It’s getting warm out.” So, the little boy took off his jacket.” Jolene explains that the moral of the story is whenever you try to force anyone in your life – your spouse, your kids, or the person you are caring for – to do what you want, they hold on even tighter. But if you are more like the sun and radiate your warmth, have some patience, and here’s the kicker – give them a reason they would understand, then they are more likely to cooperate with you. Not always, not every day. You are more likely to get a better reaction if you act more like the sun. This is so true when caring for someone living with Dementia. The more a person tries to force them into doing something they don’t want to do the harder things become. Think about your approach, body language, facial expression. 90% of our messages are communicated non-verbally. Even someone living with Dementia can sense when someone is feeling frustration. So, take a step back, take a cleansing breath, and try again. Use a calm, gentle, positive approach and chances are you will get much farther with your loved one. Communication with a person who has Dementia can be challenging because our general rules of communication do not always work. Each person with the disease will also be unique in what works for them. Your strategies for communication will need to be continually revised as the disease progresses. Learning more about your loved one’s specific type of dementia is very important to help in understanding the lost skills and retained skills. This will assist in better understanding why communication needs to be adjusted.
Did you know that the spoken word provides only 7% of any message communicated between two people? Expression and how one says the words account for 35% of any message communicated. Body language accounts for 58% of any message. This means that more than 90% of our messages are communicated non-verbally. Communication with a person who has Alzheimer’s Disease can be challenging and each person with the disease will be unique in what works for them. Some of the retained skills for most people living with Alzheimer’s Disease are music, sense of humor, ability to read non-verbal’s, long term memory, and social graces. Music and emotion are retained in more than one place in the brain. Using music and rhythm when wanting some to walk or get up or sit down works well. This technique is helpful with someone living with Parkinson’s Disease or Lewy Bodies Disease. Humor can go a long way. Approaching with a smile, light mood, can often set the tone for how cooperative the person will be. As I mentioned earlier, most communication is non-verbal’s, so your actions will speak louder than words. Pointing, touching, smiling all are generally well received. As someone progresses in this disease, the long-term memory is what will be recalled the most. Looking at photo albums, scrapbooks, home movies are all well received. Making a memory box of past mementos are enjoyed as well. Typically, people retain their social graces remembering to say please and thank you. Some changes in their communication abilities are speaking less often, relying on gestures instead of speaking, reverting to speaking in their native language, and swearing. Communicating with a person with dementia requires patience, understanding and being a good listener. So, how do you help the person communicate? When a person knows in their mind what they want to say but have a hard time putting it into words, that can be very upsetting. So be patient and supportive and let them know that you are listening and trying to understand. Show your interest with good eye contact and offer comfort and reassurance. Encourage them to continue to try and explain their thoughts. Give them time and be careful not to interrupt. Every time they are interrupted their thought process must go back to the very beginning. Avoid criticizing or correcting, instead listen close and try to understand what they are talking about and when they are done repeat back to be sure you have really understood their message. If you just can’t understand what they are talking about ask them to show you or point to what they may be talking about. It is so important to limit distractions. Turn off radios, TVs, find a nice quiet place to sit which will help support the person’s ability to focus on their thoughts. Focus on their feelings and emotions. Sometimes the emotions being expressed are more important than what is being said. Look for the feelings behind the words. At times, tone of voice and other actions may provide clues.
According to a Geriatric Care Manager, there are certain things to be aware of when going home to visit Mom and Dad. Are the proper medications being taken from the medication dispenser? Are there grab bars in the bathroom by the stool and in the shower. Are the smoke alarms functioning properly? Are there throw rugs out and potentially a tripping hazard? Are there any expired medications? Look in the fridge and freezer: a. How does it smell? b. Is there any moldy food? c. Is there little or nothing in the fridge and freezer? d. Is there an over-abundance of food in either or both? Pay close attention to your loved one and notice if they are losing weight, dehydrated, or appear depressed. Are they starting to stack the mail throughout the house for fear of throwing away the wrong thing? Are they staying home more, away from their usual activities? Are you noticing dents in the car that were not there before and your loved one really doesn’t have an explanation for what happened? Any and all these areas should alert families that it is time for a family meeting. If families can do this sooner rather than later, it may prevent a crisis from happening. All too often it ends up being a crisis before families realize that things are changing. A family meeting can be arranged by the children or they can reach out to an outside person such as a minister, trusted family friend, or professional caregiver coach or Geriatric Care Manager. The point of a family meeting is to review what they as adult children have seen during their visits to Mom and Dad’s home and what each one views as possible concerns. It is important to have a planned agenda prior to a family meeting, keeping in mind that the meeting is for and about the loved one(s). This will often help families stay on task and not get side tracked with family history issues, etc. If all agree that there are some issues that need addressing, then it may be time to ‘share the care.’ This is when each person offers to assist with one area: someone could offer to come every other weekend to clean house and do laundry. Another could offer to assist with grocery shopping and preparing meals to put in the freezer and ready for the microwave, perhaps another one could offer assistance with the finances, and another to help with doctor appointments. The point is to not have one person responsible for all the needs of the loved ones. This is a great help in assisting parents to stay home longer and more safely. These are all helpful ways that may assist in preventing a crisis and keeping everyone on the same page.
There's a growing number of retirees and elderly in the Park Rapids area, and with that, a need for services. Along with providing legal services, Thomason, Swanson & Zahn of Park Rapids now offers something new in geriatric care management. Geriatric care management includes an initial assessment by Geriatric Care Manager Laurel Hed, a licensed social worker. From there she determines the needs of the client. This may include: • Referrals for home modification • Arrange and monitor in-home help, manage medical care and attend appointments • Act as a liaison to families (living near or far), establish a written care plan which sets forth the goals and recommendations, assist with transitioning an individual to or from home to retirement, assisted living, residential care home or a nursing home if that is necessary • Advocacy, support and guidance by geriatric care manager while at home, in the hospital, in rehabilitation, or in an alternative care setting • Support with financial and legal concerns as well as public benefits application. Hed started in her position as geriatric care manager with TSZ on Jan. 2 and so far finds what she does is different for each family, and the services she provides is a continuation of what she was doing for Living at Home. "The goal is to help them (clients) stay at home as long as possible, and if not, we help them find the resources they need for the next step," she said. "A lot of times it's just connecting them to the resources in the community." Some of these things may be finding a housekeeper or a plumber or contractor needed to renovate a bathroom. Hed does not manage clients' finances and a big part of what she does is act as a liaison to family members. "A lot of that is keeping open communication with the children. I just assist and make recommendations, make the contacts and phone calls for them." Sara Swanson and partners at TSZ do elder law and what they're finding out in meeting with many families is the adult children need financial guidance to help get parents' affairs in order. For example, mom may not be able to stay on the lake much longer and dad has dementia. Swanson and Roger Zahn started looking at geriatric management services a few years ago in working with Hed through Living at Home. Swanson said, as attorneys they may not have all the answers when it comes to the geriatric management, so they put together a team approach through Living at Home. "We started seeing our elder clients coming in needing a lot more in the way of guidance and life help," Swanson said. The transition and partnership was easy for Hed as Living at Home has an office in the TSZ building located at 120 North Main in Park Rapids. By combining what Living at Home does in providing volunteer services and legal and social work services through TSZ the team approach provides a clearer picture for clients, Swanson explained. "This is kind of my dream come to reality," said Hed of her work with Living at Home and TSZ. "To work as a team is going to make it successful." Hubbard County offers many of the same services as care managers to qualified individuals and families. What TSZ and Hed are doing is providing services to those who don't qualify for assistance and are potentially falling through the cracks because they are not sure where to go for answers. "Every single situation is unique and that's what makes it exciting," Hed said. "You get to be a part of their life and be able to provide the children that peace of mind knowing someone is there and they have somewhere to turn." Thomason, Swanson & Zahn describes its first priority is to keep clients living in the home of their choice as long as possible, and oftentimes legal services are not enough to serve all the needs of the firm's elderly clients. "We know that many of our elderly clients are facing challenges related to living arrangements, transportation, medical needs, family communications and/or social issues. Our geriatric care manager will assist with crisis management when necessary, and will refer you to speak with a lawyer in our firm if legal needs need to be addressed," the firm states in its description of services.
