Tag Archives: Alzheimer’s

Caregiving goals for a new decade

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Gerhard Gellinger/Pixabay

A new decade is upon us. It’s hard to believe that we are about to begin not only a new year, but a new decade.

Caregiver advocacy will remain a focus of mine, because there is so much work that remains to be done. We’ve definitely made some progress over the last 10 years, but here are the main areas I’d like to see positive movement in over the next 10 years.

Respite care: Caregivers need regular breaks, plain and simple. Sadly, many caregivers never get a break, leading to burnout and increasing their risk of becoming ill and needing care. We need to break that vicious cycle, but there are no easy answers. Respite care requires care providers and facilities that can step in and care for a loved one while the caregiver takes a break. Many communities lack such services or have very limited services. I’d like to see more funding, at the federal and state level, and some innovation in this area to bridge the care gaps and give caregivers the breaks they so deserve.

Support in the workplace: Caregivers are hard workers, but the time they may need to take away from their job in order to care for loved ones puts their careers at risk. It shouldn’t be this way. Not all jobs can be done remotely, but for those that can, employers need to dedicate resources and support teleworking for caregivers. Alternative schedules and flexible schedules is also essential in the modern workplace. We need to allow caregivers to earn a living and provide care for their loved ones. Universal family care would address many of these issues. No one should have to quit their job to become a family caregiver.

Effective Alzheimer’s treatment: There have been several disappointments over the last decade when it comes to drug trials that once held great promise in treating Alzheimer’s. Most have failed or underperformed. There is a threat that pharmaceutical companies may turn their focus to other diseases that may be easier to crack. But there are many bright minds in the scientific community who are dedicated to the cause. I won’t be so overly optimistic to hope for a cure, though that would be the best news of all. A treatment that could delay the most severe symptoms would be welcomed.

Better end-of-life care: If the previous decade has been about aging in place, the new decade should focus on how we are going to support end-of-life care, especially those who choose to die at home. From pain management to respite care to a lack of home hospice care in rural areas, we are not delivering the “good death”  that we are capable of as a society.

I wish you and your family a happy new year and hope this will be the beginning of a decade where we all can thrive and develop a more compassionate society.

 

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National Caregiver Appreciation Month eBook Sale & Giveaway

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I can’t believe it’s this time of the year already, but November is National Caregiver Appreciation Month.

Supporting caregivers is one of the issues I’m most passionate about. Having been a family caregiver for my parents, I know how tough it can be. So I’m always happy to participate in the  annual National Caregiver Appreciation Month eBook Sale & Giveaway hosted by AlzAuthors. All books will be discounted from Nov. 21-25, with many books priced at 99 cents and some books will be available for free. You can get my award-winning book, The Reluctant Caregiver, for just 99 cents.

AlzAuthors is a group of more than 200 authors and bloggers who write on the topics of Alzheimer’s and other dementias. Many of the authors are family caregivers. I’ve seen this group grow and participate in many wonderful events over the years, and I’m honored to be a member.

In addition to books, AlzAuthors has a fundraiser going on through Nov. 25. Buy a cozy fleece jacket with the lovely AlzAuthors logo for just $44.99. These would make great holiday gifts for the caregiver in your life! All proceeds will support the continued outreach of AlzAuthors.

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What I Wished I Knew When Dementia Was Diagnosed: Anosognosia(#1) — Dealing with Dementia

I learned a new word (anosognosia) and one that is so important for families who may suspect their loved one has Alzheimer’s or another form of dementia. It can be one of the most frustrating aspects for family members dealing with this disease.

Your loved one with dementia may not be able to recognize that anything has changed with their thinking and behavior.

Read Kay’s blog post for details.

via What I Wished I Knew When Dementia Was Diagnosed: Anosognosia(#1) — Dealing with Dementia

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October 24, 2019 · 6:02 pm

Study: Women may be underdiagnosed, men overdiagnosed for MCI

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joealfaraby/Pixabay

Families who have dealt with Alzheimer’s are likely familiar with the battery of tests that loved ones go through. One of the most well-known is the clock test, where one is asked to draw a clock with a specific time. While my father never was subjected to such tests that I know of, I witnessed my mother do the clock test when she became ill. She didn’t have Alzheimer’s. The tumor in her colon had made her unable to eat, and her sodium levels were out of whack, which can induce temporary delirium. The symptoms closely mimic dementia, and it was frightening to witness in my mother, just months after my father died from Alzheimer’s complications.

My mother struggled mightily to complete the test, as I wrote about previously. If you look at examples online, some people have trouble getting the hour numbers positioned correctly, while others struggle with drawing the lines to the hour and minute. It is a surprisingly simple, but informative exercise. (I’m not sure what they will do for younger generations who only know how to tell time in digital format.)

In addition to visual tasks like the clock test, testing for dementia also involves asking a person to remember a set of simple words. The person is then asked to recall those words at various time intervals.

A new study suggests that because women generally have better verbal skills compared to men, they may be underdiagnosed when it comes to mild cognitive impairment (MCI) while men may be overdiagnosed. A misdiagnosis can have a detrimental impact, either delaying potential treatments or subjecting someone to treatments with side effects. MCI can raise the risk of developing dementia.

Additional studies are needed to confirm the findings, but for those families going through diagnostic testing for dementia, gender differences are something to keep in mind. A person’s education also can help them perform better on tests, even though their brains may show significant changes associated with dementia.

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Planning for the Future With Elders Facing Alzheimer’s or Dementia

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Alzheimer’s and other dementias can creep into a family’s life until loved ones find themselves overwhelmed and unprepared for the severity of the disease. That’s why having a care plan is so crucial. The guest post from Mile High Estate Planning offers key areas that need to be addressed.

It can be difficult to face conversations with your loved ones after a diagnosis of Alzheimer’s or dementia. However, interaction with others is important for helping them retain important social and cognitive skills. And, there are some conversations that will help you care for elders facing a dementia diagnosis.

To get you started, we have put together a few questions that can help get important conversations started. We have also included some tips for effectively communicating with people living with dementia or Alzheimer’s disease.

Planning for the Future

No matter how bleak that future may look, you still must plan for it. Consulting an attorney who specializes in Elder Law can help you decide what questions are most relevant to your family’s situation. Here are some general guidelines.

Have they completed all of the important and necessary legal documents? Talk to your loved ones about updating and finalizing wills, estates, and trusts.

Make sure that their finances are in order. This might be a good time to find out who should make financial decisions once the elder is no longer able to do it themselves. Talk to a financial planner about the best way to ensure your loved one’s wishes for their accounts are honored.

Ask what type and level of care the person wants to have as their disease progresses. Do they want to go into a nursing facility or stay at home? Is there anything that would signal whether treatments should continue or end?

Is there someone they would like to make decisions on their behalf if or when they are unable to? Be open to the idea that this person may not be you, and don’t belittle or second guess their decision.

Remembering A Life Well Lived

Now is the time to start a conversation about your loved one’s life. Ask questions to stimulate memories of special events, accomplishments, favorite places, anything they remember as important or special.

Fortunately, your conversations don’t have to focus only on the end of their life. The beginning and middle are important parts too, and should be remembered, discussed, and cherished as long as possible.

If your loved one keeps bringing up a particular hobby or interest from their past, make sure that is part of their future too. Keeping plants in the room can satisfy a love of gardening and a birdfeeder outside their window can attract wildlife for an animal or nature lover.

Keeping Lines of Communication Open

Unfortunately, dementia can make even basic communication difficult as it progresses. Your loved one may find it hard to come up with the right words or names for objects and people. Their logic may seem off, and conversations can start to flow in an unpredictable manner. Some people may revert to a native language from their younger days.

These are all normal effects of dementia and are nothing to be ashamed of. Since it is so important to keep people living with dementia and Alzheimer’s disease engaged, do not let these challenges dissuade you. Isolation can quickly lead to depression. Instead, follow these tips for successful communication.

Don’t assume you know what the person is capable of. Everyone will be affected by dementia in a different way. Instead, ask them what style or methods of communication are most comfortable for them. Maybe they prefer talking in person to phone calls.

Dementia slows response time, so don’t rush or force a conversation. Give the other person plenty of time to think about what you said and come up with a response on their own. This gives them the opportunity to share their thoughts, feelings, and ideas without interference.

As dementia progresses, your loved one will have more trouble coming up with words. Try asking simple questions that can be answered with a yes or no response. Visual cues or written notes can be very helpful in getting ideas across.

Since they will likely have trouble concentrating, try to eliminate background noise. Also, don’t overwhelm them; ask one question at a time so they can focus on what you are saying.

Unfortunately, as the disease progresses communication will become more and more difficult. By the later stages of dementia or Alzheimer’s disease, it may be reduced to sounds or movements. Consider the feelings behind those gestures.

Focusing on What’s Important

Communication is a tool. Use it to understand what is important to your loved one as they face their diagnosis and adjust to living with the disease. Remember that there is no shame in having dementia and to always treat your loved ones with the dignity and respect they deserve.

 

Author Info

blake harris

Blake Harris is the Managing Attorney at Mile High Estate Planning where he assists clients with Wills and Trusts, Asset Protection, and Probate. Blake has extensive knowledge and experience helping families plan for and manage the transfer of their assets.

 

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4 Realistic Self-Care Strategies for Alzheimer’s Caregivers — The Diary of An Alzheimer’s Caregiver

It’s something we don’t talk enough about, but it is so important: self-care. I know that phrase has become a bit touchy in certain circles, because it can seem like you are dumping one more responsibility on an already overworked caregiver. The sad truth is that in most cases, no one is going to offer you a respite out of the blue. You have to know your limits as a caregiver, ask for help when needed and yes, take care and be kind to yourself.

Read these helpful self-care tips via the blog post below from The Diary of An Alzheimer’s Caregiver.

Sign up to get these posts and a whole lot more delivered right to your inbox! The Diary of An Alzheimer’s Caregiver – Appreciate the good, laugh at the crazy, and deal with the rest! Caregiving is hard no matter what. Alzheimer’s caregivers, however, have an especially difficult job. Not only do people with Alzheimer’s…

via 4 Realistic Self-Care Strategies for Alzheimer’s Caregivers — The Diary of An Alzheimer’s Caregiver

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August 23, 2019 · 5:27 pm

Moving video on ‘Leaving Alzheimer’s Behind’

 

Those who have faced Alzheimer’s or other dementias in their families know that it can be a dreadful roller coaster ride, and while in the early stages there may be quite a few “good” days, they often seem overshadowed by the “bad” days.

One man in the UK who has early-onset Alzheimer’s is hoping to send a different, more hopeful message. He is using his beloved hobby of cycling to spread the message across the country.

Peter Berry was diagnosed with early-onset Alzheimer’s at 50, after 3 long years of trying to obtain a diagnosis for his increasingly troubling symptoms. He sank into a deep depression for about a year, but when he emerged, he was determined to help others who find themselves in a similar situation. Through a video series and on social media, Berry shares his experience and what has worked for him, including a healthy diet, regular sleep and long bike rides.

While he’s under no illusion as to what Alzheimer’s ultimately holds in store, he stresses the importance of having a positive outlook: “People who suffer from the disease know the journey and path we’re taking. We all know the end product of this disease. But it’s all about what you do in between. It is not about what I can’t do, but what I can do.”

Watch his inspiring story, produced by Being Patient, and share with others.

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