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Archive for 'Dementia'

Dementia…that single word carries with it a tremendous amount of stigma.  But it is the second most common diagnosis given to older adults. And perhaps the most difficult to accept.  Once that label has been given, people never forget it. As this happened to several of our client this week, I wanted to address two of the questions we are asked most often after someone receives a Dementia diagnosis starting with “What exactly is Dementia and how is it diagnosed?” 

Dementia is an umbrella category that serves as a catch all for different types of cognitive disorders, ranging from simple short or long term memory loss to more specific diagnoses including Alzheimer’s disease.  Dementia diagnoses are usually made by combining someone’s history and experiences with some type of testing, so that objective evidence and observed functioning together form the basis for the diagnosis.  MRIs or other brain scans are helpful to identify vascular dementia and rule out physical causes for cognitive difficulties such as brain tumors.  More extensive neurological and psychological testing are available and can provide objective measures of cognitive abilities and identify specific areas of strengths as well as deficits.

Cognitive screening tools however, are available to anyone regardless of history of symptoms, and are very low cost.  Screening tools are designed to help people identify whether or not a more thorough evaluation is necessary, and scores are broken down into three distinct categories of “Normal, Mild Cognitive Impairment (MCI), or Dementia”.  Cognitive screening is a great place to start, but it is important to remember that the results may not be conclusive.  For example, if someone’s score results in a determination of MCI, it would be important to follow up with more in-depth testing.  There have been many instances of people who are highly intelligent testing as MCI when further testing indicates Alzheimer’s disease. Their intelligence allows them to compensate for their cognitive deficits on the screening tool, but cannot be sustained through more extensive testing.

Which brings us to another frequently asked question: “Why is it important to be screened or tested?”  That’s an individual decision, but unfortunately at this time there is no cure for Dementia.  However, there are several medications that are believed to slow down the progression of the disease and help keep people living with more mild to moderate forms rather than severe.  If that is the case then starting treatment as early as possible is important to help preserve cognitive functioning.  The decision to use medication is of course an individual one, and needs to be made in consultation with a doctor who can explain the benefits as well as possible side effects.

Counting my blessings while I still can,

Lynn

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Have you ever walked out of a parking lot and had to think for a moment because you weren’t sure where you had parked your car?  Or searched the house because you couldn’t find your keys? I know most of us have.  And for a second we usually joke about losing our memories or getting older, but the reality is that most of us lead very busy lives, and we don’t always pay enough attention to the routine tasks we do each day, and occasionally have difficulty remembering where we left our keys (or car).  And that’s perfectly normal, especially as we age.  So how do you distinguish when your level of forgetting is no longer what would be considered normal?  And how difficult must it be to accept that?

Generally speaking, when memory loss or confusion is severe enough to interfere with someone’s ability to work and maintain a social life, it is no longer considered normal age related cognitive changes.  Instead that’s probably the time to consult a neurologist or geriatrician for a closer look.  But the fact that some of these things occasionally happen to all of us, ironically feeds denial, both on the part of the person living with dementia, and their family members.  Luckily, education and support are available, both one -on-one and support groups.  Support groups are offered through the Alzheimer’s Association, as well as through many memory care communities and adult day treatment programs.

In the meantime, if you would like to better understand how it feels to be someone living with dementia, pick up a copy of Still Alice, by Lisa Genova.  It is a really quick read that paints quite a vivid picture.

Pulling out my copy,

Lynn

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While many of you were hopefully enjoying some fun in the sun on this 4th of July weekend, my family’s weekend was bustling with indoor activity because my much loved niece got married on Saturday.  The festivities spilled over into the entire weekend.  It was absolutely heartwarming to see so many familiar faces again, all in one room.  And as we made our way from table to table, gathering snippets of conversation as we went, I think we were all experiencing a myriad of thoughts and feelings.  Some heartwarming, “Where has the time gone?”, others silly “Look who asked who to dance…”, but I was surprised at the direction my own thoughts were taking.

I was struck by something altogether unexpected, namely the fact that there were many older adults in the room from both the bride and groom’s sides of the family, and absolutely none of them appeared to have any type of dementia!  Given the work that I do, all too often I see the way dementia robs older adults of their independence, their relationships, and often their peace of mind.  I see it so often that somewhere along the line a part of me began to accept it as a consequence of growing older.  But seeing this vital, thriving group of seniors actively engaged and enjoying this phase of life, reminded me that it doesn’t have to be that way.  Whether the causes are due to genes, lifestyle, luck or a combination of factors, clearly the quality of life implications are impossible to overstate, and deserve our time and attention, as well as ways to prevent and treat this challenging disease.

Relishing my memories,

Lynn

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The 4th of July is just a few days away, and families across the country are planning picnics, barbeques, and other celebrations.   If you are having an older adult join you and your family this year, here are a few things to consider in order to help them have as much fun at the outing as you do.

Heat: If you’re planning an outdoor function remember that older adults are more sensitive to heat, and because of that are more susceptible to heat stroke.  If possible, choose an area with some shade, or if that’s not possible, bring a canopy or sun umbrella from home.

Dehydration: Be sure to have a selection of non-carbonated cold drinks available to help ward off dehydration.  Water, lemonade, and Gatorade are great choices.  Popsicles work well this time of year too.

Balance: Because the ground outdoors is often uneven, and patio chairs can be slightly unsteady, balance issues can become a concern.  In order to reduce the risk of a fall, pick a level spot to put your sturdiest chair, and save that seat for the older adult in your life.  It’s helpful to minimize the amount of walking to get to the food as well.

Dementia:  If one of your loved ones has dementia, an afternoon celebration might be easier for them than an evening one.  Often times people with dementia can become more confused during the evening hours.  A smaller crowd is also less overwhelming for people with dementia.  For more tips on how to customize family gatherings for relatives with dementia, please refer to my former blogs on the topic.

A little bit of thought up front can lead to a great time for all!  Happy 4th everyone!

Firing up the grill,

Lynn

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High summer temperatures and beautiful sunshine create an irresistible temptation to explore and enjoy what we have all waited so long for. However, it can also pose a significant increased risk for wandering, which is defined by the Alzheimer’s Association as “a behavior of people with dementia who move about in ways that may appear aimless, but which are often purposeful.” Up to 69 percent of those with dementia will wander.

            According to Lisa Gardener, Family Service Program Coordinator of the Alzheimer’s Association , Greater Michigan Chapter, while wandering can be dangerous and life threatening, wandering within safe conditions can actually be beneficial. Safe wandering can occur when precautions are taken and boundaries are set to ensure the safety of the individual with memory loss.  There are times when attempting to stop the wandering behavior creates more agitation or anxiety in the person with memory loss. It’s important to look at the benefits of safe wandering. Here are some benefits to safe wandering that are sometimes taken for granted:

  • Provides physical exercise
  • Promotes a sense of freedom and independence
  • Offers a social opportunity between the caregiver and person with memory loss
  • Promotes a sense of independence for the individual with dementia
  • Reduces boredom
  • Can be calming for a person with memory loss
  • May help assist in calming an individual with memory loss who is upset

 Here are some tips to aid an individual with memory loss with safe wandering:

  • Provide a safe environment for them to walk in (example- an enclosed courtyard or hallway)
  • Look into in home devices that can help alert the caregiver when the person with memory loss is trying to leave a safe environment
  • Offer to help them find what they are looking for
  • Offer to take them for a drive, or go be a companion for a walk,  if they insist on leaving the premises
  • Call another friend or family member to come over and assist if needed
  • Find a friend or family member to go visit during these times, which can help in redirecting the individual with memory loss
  • Once the individual with memory loss has been reassured, find a way to redirect their attention

Wandering becomes a problem when it puts the person with memory loss or other people in a life threatening situation, and it’s important to be prepared if the situation ever arises. The Alzheimer’s Association has a Medic Alert + Safe Return program which has a 98.9 percent success rate of finding a lost individual within the first 24 Hours. If you would like more information regarding the Medic Alert + Safe Return/ Comfort Zone program, call their 24 Hour Harry L. Nelson Helpline at 1-800-272-3900, or visit www.alz.org. Alternatively, several personal emergency response systems have a GPS feature which can be helpful locating someone who is wandering.  Whichever option you choose, keeping your loved one safe is what matters.

Going for a walk,

Lynn

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As Geriatric Care Managers we often talk about helping improve quality of life for our clients, many of whom have dementia.  And often times this involves providing companionship and offering choices.  But yesterday, while attending a networking meeting for professionals who work with seniors, I heard about a program that is a tangible quality of life enhancement and I couldn’t wait to tell you about it!

The Detroit Institute of Arts, in partnership with the Alzheimer’s Association, is offering a free 6 week program called Minds on Art for people living with Alzheimer’s and their companions.  The program will offer the opportunity to engage socially, cognitively and artistically, and will be held at the DIA.  The format includes a one hour gallery tour and discussion followed by a short break, and then time in the art studio.  The program will be led by DIA staff and volunteers, and a member of the Alzheimer’s Association staff will be there as well.  This program struck a powerful chord for me because I have worked with several clients living with dementia, for whom artistic expression remains a source of joy, long after the onset of dementia.

The sessions will be offered on Mondays for people in the mid-stage of dementia and their companions, and on Tuesdays for those in the early stages.  The 6 week courses begin in April and run through the end of the year, however space will be limited as these are very small group activities.  To register or for more information please contact Jean Barnas at (800)272-3900 or jbarnas@alz.org.

Calling my clients with the news,

Lynn

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Often times when people help their parents with the decision to move to a more supportive environment they are uncertain about what level of care is needed, independent living, assisted living, memory care or a skilled nursing facility.  Often at the root of their indecision is the question as to whether or not someone will need to move again.  Is that something to avoid at all costs?  The answer to that question is tricky…particularly for people with dementia.

Moving is certainly disruptive to all of us, regardless of our age, but for older adults who may have some cognitive issues, a move can be very disorienting.  So that’s one vote against multiple moves.  Another consequence of making multiple moves the risk of waiting too long to make that next move to a memory care environment, when it can be much more challenging to learn your way around, make new friends etc. 

However, sometimes family members may feel that their parents aren’t ready for a memory care environment and could function quite well in an independent or assisted living environment, as long as they have meals provided, medication management available etc.  Even moving to a continuum of care retirement community doesn’t preclude the need to move again, only this time the move is on the same campus.  Nonetheless, the physical layout of the room is different, the staff is different, and fellow residents are different.

I may have muddied the waters more than offered clarity, but the bottom line is that it’s an individual decision.  Finances can also be a factor as well.  Generally speaking, the higher the level of care, the higher the costs.

If you are struggling to help someone make this kind of decision, contact a geriatric care manager, so they can help you come up with a plan tailored to your loved one’s strengths and individual needs.

Always planning,

Lynn

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I said good-bye to my beloved grandmother, Nannie, as I called her, in late November 2008. Alzheimer’s disease had ravaged her brain and taken away the grandmother I knew as a child. She was diagnosed in 2001 and steadily began to decline. Gone was the vibrant, eccentric gourmet cook, artist, and world-traveler, among other talents. She no longer helped me make cookies, sent me hand-drawn cards, or went on safari in Africa. She now needed to be reminded who I was, what food she was eating, how to get dressed.

She moved in with us and I watched as my mother had to essentially care for a second child. It must have been difficult, having one child going off to college and not getting an empty nest as she had been expecting. It was challenging for all four of us (My parents, my grandmother, and I) as we all had our roles constantly redefined, changed, and renamed. I was no longer granddaughter, I was big sister. My mother was no longer a daughter; she was a mother to her mother. My father was just a visitor. Even the dog played along: he was now the cat.

Within these roles, our responsibilities and expectations also changed. We no longer ventured far from home. I would have to “baby-sit” my grandmother and make sure she didn’t try and walk down the stairs for fear of a fall. My grandmother would set the table; someone else would reset it with the proper dishes and silverware for each setting. We all learned patience and creativity as we tried to keep her occupied and happy. We repeated ourselves often. The dog learned that he would have to go outside to do his business every 15 minutes because Nannie would forget she had already let him out.

As her disease progressed, it became obvious that she was no longer safe in our home. My parents woke up in the middle of the night to find her outside in her nightgown in December waiting for the bus to “go home.” With much pain and regret, my mother made the decision to place her into an assisted living unit. Faithfully, she visited my grandmother nearly every day. For over three years, my grandmother was in this facility before she went into hospice.

A few days before she was moved to hospice, she was having a particularly good day. I had taken a leave of absence from work so that I could be with my family and spend time with my grandmother, so I was sitting with her in the common room when she had a completely lucid moment, looked right at me and said, “I love you, Jennie.”

I think about this moment often. It is something I hold onto, for in all those grey, dark days where Alzheimer’s had taken over, this is a memory that shines like sunlight. It chases away all those negative thoughts and is how I like to remember Nannie in those last few weeks leading up to her death.

Jennifer Simms-Coffey

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Hospice…the word alone is enough to conjure up frightening images for many people.  But hospice services can bring relief from pain and extra support for older adults and their families, at no out-of-pocket cost because hospice services are covered by Medicare.  Those of you who are regular readers of this blog already know that, because it is a topic I feel passionately about! 

But what you may not know is that dementia is a diagnosis that can qualify someone to receive hospice services.  Medicare has a specific set of criteria that must be met in order for someone to be certified hospice eligible.  Dementia criteria include the following:

  • Unable to walk without assistance
  • Unable to dress without assistance
  • Unable to bathe without assistance
  • Constant or intermittent incontinence
  • No consistently meaningful verbal communication
  • Significant weight loss in the past year

As you can see from the criteria, someone with mild to moderate dementia would not qualify, but someone living with the advanced stages of the disease would likely be eligible.   And hospice can truly make a difference for people at this stage, most often by adjusting medications and providing weekly nurse visits for oversight.  Many times these slight medication adjustments can help someone be able to speak a few words, who had seemingly lost that ability, or help with behavioral issues that arise from frustration.

As a friend of mine who works in the hospice field is always saying “Even when there’s no cure, there’s hope.”

Lynn

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Almost everyone knows someone who is living with Alzheimer’s.  I will never forget the day when my great-aunt, my oldest living relative, looked me square in the face, and called me by my mother’s name. It was heartbreaking that she didn’t know who I was, and although I wanted to tell her it was me, I knew that even if I corrected her, it would do no good. 

This past spring, the Obama administration took a giant step toward progress by  developing  a National Alzheimer’s Plan, with the hope to prevent and effectively treat Alzheimer’s disease by 2025.   The crux of the plan begins with an investment of $156 million dollars to increase Alzheimer’s disease research,  and support people currently living with Alzheimer’s.

The details of the plan are many, and its mission and goals are specific.  But what it represents to so many of us can be conveyed in one simple word…Hope.

For more information on the details of the plan, visit http://aspe.hhs.gov/daltcp/napa/NatlPlan.shtml#intro

Remembering,

Lynn

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