Got all of your presents purchased, wrapped and ready to go? Well then, you're more on top of it than I am, though sometimes that doesn't take much!
In case you're still searching for that perfect gift- and the person for whom you're searching is someone with Alzheimer's disease (or another kind of dementia) or a caregiver, I've put together a few ideas that might help with that dilemma of, "What do I buy? What do they really need? What would be a meaningful gift?"
Next, how about those who are more towards the middle stages of dementia? While there's no clear line that people cross when they progress from one stage to the next, those whose symptoms of dementia (such as memory, word-finding and judgment) are increasing may benefit more from some of these ideas: Thoughts on Gifts for People with Early to Middle Stage Dementia
What if your loved one's symptoms are more advanced? For those with symptoms of dementia that fit more with middle or late stage dementia, here are some suggestions for gifts that may be helpful for them: Gift Suggestions for People with Middle or Late Stage Dementia
How about the caregiver? If you have a friend or family member who is the caregiver for someone with dementia, do you know what she'd really like? Try these possibilities: A Dementia Caregiver's Wish List
Last but not least, perhaps you're in the middle of providing care for a loved one with dementia. Here's an idea: give yourself a gift this holiday season. While that may strike you initially as selfish, I assure you that it's the exact opposite. Taking care of yourself through some of the ways mentioned in this list below (or other ways) is one of the best gifts you can give to your loved one with dementia. So, have at it: For the Caregiver: Gifts to Give Yourself
Thanksgiving- the time of year when we pause to be intentional about gratitude. You may be overflowing with thankfulness this year and not even sure where to start when listing off the reasons you have to be thankful this year.
If you're in the "or not" category, where, when you try to think of specific reasons for gratitude, you're coming up empty, this is for you.
Thanksgiving doesn't have to mean that you place your rose-colored glasses on your nose and decide that all is right with the world around you, when that clearly isn't the case. It doesn't mean that you have to be thankful for your cancer or your Alzheimer's disease or the loss of a family member.
So, what then? If Thanksgiving doesn't require a fake smile and an "everything is fine" facade, what do you do when life is hard and your heart is heavy? How can you celebrate Thanksgiving when that chair next to you at the table is empty, and it shouldn't be? What's gratitude-worthy about dementia, either for the person experiencing it or the family member watching it, or for any of the other hard things that may have come your way this year?
The answer, in my opinion, might be, "Nothing." Yet. For now. In that situation.
But, consider this: you will be doing your heart and mind a favor by seeking some reasons to be thankful, even if they are minute, even if you can come up with only one thing. Thankfulness typically begins with one small step, and that usually grows to another.
According to research, gratitude can help you cope with challenges and loss. Maybe, despite your situation, you can find a reason to be thankful about something, or anything, in your life. Maybe, once you start, you can release a little of the hurt or grief or anger or despair or emptiness, and replace just a little of that space with one pebble of gratefulness. And, maybe you can be in the midst of the hard places and at the same time, have gratitude for someone or something.
Maybe you can be grateful for the wonderful caregiver that helps care for your wife, or for the good day your dad had today, or for the knowledge that you don't have to walk the road alone. This Thanksgiving, what's one thing you're thankful for?
Recently, two research studies looked at how music affected people with Alzheimer's disease and other types of dementia. The aim of these studies was to figure out if music did more than just calm people with dementia- an already established important benefit.
One study was published in The Gerontologist and involved 89 people with dementia whose mental ability was measured prior to the study with a variety of cognitive tests. For 10 weeks, they participated in one of three randomly assigned groups- a musical singing group, a musical listening group or a usual care (control) group. After the 10 weeks, their cognitive functioning was again evaluated. The participants in both the singing and listening groups showed improved orientation, remote episodic memory, executive functioning, and mood. Those who were in the singing group also specifically improved their short term memory and working memory.
A second study that was presented last week at the Society for Neuroscience meeting involved residents of a secure dementia unit who were assigned to either a singing group or a listening group. After four months, those who were in the singing group showed significantly higher mental status test scores compared to those who were in the listening group. The cognitive assessments included the Mini-Mental State Exam and the clock drawing test.
The take-away? For me, there are a couple of things here. One, participating in music by singing familiar songs (often songs from the person with dementia's younger years) is not only a meaningful activity to pass the time, but also a way to maintain and even improve cognitive functioning. That could be a more effective treatment than most of the medications approved by the FDA.
And two, it provides a great example of why we can't just throw in the towel when someone is diagnosed with dementia. Yes, it's a progressive disease currently without a cure. But there are ways to slow that progression and improve the quality of life for both the person with dementia and their caregivers. And that's hope.
It's November. In addition to being the month in which we celebrate Thanksgiving, November is also designated as Alzheimer's Disease Awareness Month and National Family Caregivers Month, two causes that are near and dear to my heart.
So, let's talk about Alzheimer's disease awareness. Perhaps you're painfully aware of Alzheimer's disease, whether you're trying to cope with a recent diagnosis of it yourself or walking along side a friend or family member who's struggling with its effects. But are those around you also aware?
Perhaps you could share a few facts with them at an opportune time. After all, until someone speaks up, most of us think that diseases and challenges - unless they're currently happening in our own circle of family and friends - are things that only affect other people. This attitude is usually not intentional; it's just a way of mentally weeding out things in life to which we will and won't give our attention.
A few quick facts from the Alzheimer's Association:
- Did you know it's ranked in the top 10 for causes of death at number six? (See the US CDC report here.) And, out of those causes of death, all other top ten causes have some type of effective treatment, except for Alzheimer's disease.
- One out three older adults dies with Alzheimer's disease.
- Every 68 seconds, an American develops Alzheimer's.
- 203 billion dollars- That's how much Alzheimer's will cost the US in 2013.
Alzheimer's Disease Information at a Glance
Here are a few articles on some of the common questions about Alzheimer's disease:
For the Caregivers
Now to highlight the caregivers. Despite the challenges of caregiving (and in Alzheimer's disease, these can be significant), caregivers often talk about the honor and privilege they feel in being able to care for a loved one who is living with dementia. For many, caregiving ends up being a unique blend of being stretched to (and beyond) their limits and being blessed at the same time.
Caregivers at a Glance
Do you ever wonder about the quality of life for people who have dementia? I'm not talking about someone's last few days in end-stage dementia. I'm talking about the early and middle stages of Alzheimer's disease and other types of dementia, where people might struggle with finding words to express what they're feeling, forget that they're mother passed away twenty years ago, or require care in a nursing home. What about these people? What kind of quality of life do they have?
As with many things, it depends on whom you ask. Fortunately, the Alzheimer's Society in the United Kingdom conducted an exciting study in 2010 on this entitled, "My Name Is Not Dementia" (What a great name!). The researchers asked people with dementia, many of whom lived in a nursing home or other care facility, about their quality of life. The study was intentional in their efforts to include people both in early and later stages of dementia, as well as people of different ethnicities.
The results of the study? The persons with dementia tended to feel more positive about their quality of life than their caregivers or family members did, and even those who were well into symptoms of dementia were able to express what was important to them. Responses were expressed verbally (and many quotes are included in the research report from the study) as well as through the use of picture cards that allowed people whose verbal skills were impaired to clearly communicate their opinions and thoughts.
Want to know the most important factor for quality of life according to this report? (Spoiler alert if you want to read it for yourself in the link below...) The number one factor is: "Relationships or someone to talk to." So, if you think spending time with someone who has dementia isn't important because they'll forget you were ever there, you're wrong.
The link to the report can be found here and the document is 64 pages long. Out of those 64 pages, one paragraph sums it up for me:
"Maintaining a good quality of life is perfectly possible following a diagnosis of
dementia. Services for people with dementia, and the wider community, should
not make assumptions that following a diagnosis of dementia support to improve
a person's life is pointless because it will have no impact on quality of life. There
are many factors outside a person's dementia that affect their quality of life and
this indicates that services should develop so that they can address these wider
quality of life issues. Despite being a progressive, terminal condition that severely
affects a person's mental functioning, dementia may not affect a person's quality
of life in respect of emotions, feelings and mental well-being in ways that one
would expect. Quality of life is defined primarily by the person, as a person, and
their circumstances, not their dementia."
I love this paragraph. Let's not write off people with dementia, just because they have this disease. And although dementia is a terrible disease and robs a person of so much, let's not give it more power than it already has by assuming a diagnosis of Alzheimer's disease equals a terrible quality of life.
For more on this report and a compilation of several other factors that can affect a person's quality of life, both from research as well as from my own clinical observations, here's my latest article: How Can You Improve the Quality of Life for Someone Who Has Dementia?
Thoughts? Feel free to comment below on your own experiences and observations regarding quality of life in dementia.
For those who struggle with insomnia, lying awake at night can be extremely frustrating. But for a very few people in the world, it can be deadly.
Fatal familial insomnia is a rare neurological disorder that causes sleep problems, difficulties in movement, personality changes and dementia. It's a progressive disease, meaning that it gets worse over time and eventually leads to death.
Like Creutzfeldt-Jakob disease (the more well-known and often misnamed "mad cow disease"), fatal familial insomnia is a hereditary prion disease. Fortunately, it's extremely rare, so the next time you're unable to sleep, this is one condition you very likely don't have to worry about unless it runs in your family. Less than one in a million people develop fatal familial insomnia.
Here's more on fatal familial insomnia: What Is Fatal Familial Insomnia and Is There Any Treatment?
Perhaps you've heard lately of a different label being used almost as a nickname for Alzheimer's disease- "Type 3 Diabetes". If you're anything like me, you may be wondering why they- the researchers- are using this term, and if there's any truth in it.
Being intrigued, I read up on "Type 3 Diabetes," and thought I'd share some interesting facts with you.
First, as mentioned in an earlier post here, people who have type 2 diabetes are at a higher risk to develop Alzheimer's disease.
Second, Alzheimer's affects the brain's ability to process glucose, but unlike type 1 and type 2 diabetes, the dysfunction in type 3 diabetes (Alzheimer's) only occurs in the brain. The rest of the body, if it doesn't have (or develop) diabetes, remains able to process glucose.
Third, there's a lot of research being conducted right now to determine if insulin sensitizing medications that are used for type 1 and type 2 diabetes will help improve cognitive functioning for people who have Alzheimer's disease. I referenced one study a few weeks ago, but there are many being conducted right now.
While it's too early to tell how effective this type of medications will be for treating Alzheimer's, scientists do seem to feel that understanding the connection to the brain's ability to process glucose may be one of the many pieces to the puzzle of Alzheimer's disease.
To learn more about the relationship between type 2 diabetes and Alzheimer's disease, as well as a more detailed explanation on type 3 diabetes and how it affects the brain, please reference the full article here: Why Is Alzheimer's Called Type 3 Diabetes?
Hallucinations can be distressing for the person with LBD to experience, and they also may be difficult for caregivers to know how to handle. So, what's an effective way to respond to these hallucinations?
While there's no one-size-fits-all response, one approach you may want to avoid using (or at least use with caution) for someone with Lewy body dementia is the therapeutic lie. The therapeutic lie, where the caregiver may bend the truth with good intentions, has been recommended by some people in an attempt to reassure someone with Alzheimer's disease.
However, people with Lewy body dementia who hallucinate are often functioning at a higher cognitive level since hallucinations tend to develop early in LBD than in Alzheimer's. Some caregivers have shared that their attempts to untruthfully reassure someone have backfired because the person with LBD could detect the untruth and then became even more upset. In other situations, however, caregivers have had success in "going along with" the hallucination, and expressed that they felt this was the only way they could help their loved one at that time. (Of interest, the Lewy Body Dementia Association has a forum where caregivers share some concerns and ideas.)
My Two Cents
When working with someone who has dementia (regardless of its type), I would advocate for first trying validation therapy, distraction through meaningful activities or other kinds of reassurances. To me, these other approaches- when possible (and I realize there may be times where they're not possible or effective)- make sense, both because they are often helpful, as well as due to my own preferences for how I would want to be treated.
For more ideas on how to respond, here's an article I recently wrote on this topic: Responding to Hallucinations in Lewy Body Dementia
More About Lewy Body Dementia
If you've ever read research on clinical trials for treating Alzheimer's disease or other types of dementia, chances are you may have seen a reference to the ADAS-Cog- an abbreviation for the Alzheimer's Disease Assessment Scale- Cognitive sub-scale. The ADAS-Cog is a frequently used test that measures cognition. It not only identifies people whose ability to think, process and recall information is impaired, but it also measures the extent of the impairment. So, in clinical trials where a drug may be tested to see if it can improve memory or other aspects of cognitive functioning, the ADAS-Cog is often one of the tools used to determine if there has been any difference since the treatment was started.
For example, here's an article outlining IVIG therapy which was tested in people with Alzheimer's disease in a clinical trial with very positive results: Study: Treatment Stabilized Alzheimer's Patients for 36 Months.
To learn more about the ADAS-Cog, including the 11 items it specifically measures, as well as how it's scored, here's more information:
It's that time of year again, where we'll start to see signs at the pharmacy, doctor's office and medical centers reminding us to get our annual flu shot. So, will you be getting a flu shot this year?
To me, as an advocate for people with dementia and their family members, there are two important questions about flu shots, in addition to the question of how effective each year's immunization will be in protecting people from influenza.
First question: Do flu shots affect your chances of developing dementia?
Second question: If you have a loved one with Alzheimer's disease or another dementia and are asked for your consent for a flu shot for him or her, should you give your permission?
There are very strong opinions on immunizations out there, and you will hear every perspective from one end to the other, and everything in between as well. So, where do you start? How do you make these decisions, especially when you're making them for someone else?
In order to help provide a place to start, I spent some time researching these two questions and wrote the results here:
My hope is that this is helpful in your decision-making process, even if you disagree. Feel free to share your thoughts below.