The Right to Be Heard

Posted on August 02, 2017 by Anne Ellett

The Dementia Action Alliance (DAA) conference last month in Atlanta was such a breath of fresh air! Like most professional conferences, there was a great exchange of ideas and an abundance of experts discussing their research. The difference at this conference was that many of the experts were people living with dementia (PLWD). The richness of their experiences and ideas was insightful and reminded me that the PLWD is the expert here.

If I were to sum up those two and half days of conference sessions, I would say the theme was broadening the social debate. Are we in-tune with the rights of PLWD to be heard and to be included? Do we presume capacity first before we take away choice? There was significant conversation about the bio-medical model that highlights inabilities and losses and sets up boundaries for the sake of convenience, limiting choice. In care institutions, our discussions focus on “What’s the risk of allowing this?” rather than “What’s the risk if we don’t do this?” Our emphasis on safety and convenience can downplay the rights of PLWD to be able to live a full life.

The conference started and ended with a panel of PLWD sharing their experiences. Their combined voices were strong and the theme was on living with dementia. Some of the required elements for living a full life with dementia included maintaining relationships, opportunities for continuation of normalcy, and personal autonomy. An experience frequently shared by PLWD was the reaction they received from their friends, business partners and medical personnel when their diagnosis of dementia became known. Friends stopped visiting, business partners assumed incapacity and medical personnel didn’t offer hope or rehabilitation. Do we provide the necessities for care but not for living?

Let’s take a moment to stop and think about our own relationships with PLWD – can we do better? I recommend the DAA website to view valuable resources.

 

If you work in Assisted Living or LTC and
want to make your dementia care program even better,
or if you need assistance in planning space
in your upcoming development for memory care,
contact me to set up an appointment. 

Have a great day!

Anne Ellett, N.P., M.S.N.
AEllett@MemoryCareSupport.com                                                                                           
949 933-6201

Posted in daa, dementia action alliance, people living with dementia, plwd

Why Don’t We…?

Posted on February 15, 2017 by Anne Ellett

Often when working with LTC and Assisted Living communities, I am asked how they can improve their Activities program. I usually begin by taking a look at what is currently being offered – and often, it is “activities”, rather than  meaningful engagements – there’s a big difference!

“Many think it is the disease that causes us to withdraw, and to some extent I believe this is true. But, for many of us, we withdraw because we are not provided with meaningful opportunities that allow us to continue to experience joy, purpose and engagement in life.” 

This quote from a study entitled, “Just Dance with Me”(1) speaks to the desire for purpose and engagement, rather than passive entertainment.  Don’t get me wrong, we all love a great singer or musician to entertain us, but Dean Martin impersonators don’t really deliver on purpose and meaningful engagement.

 
So how can you structure your Engagements to offer purpose and engagement with life?

  1. Consider that meaningful engagements can be spontaneous – they don’t need preparation, but rather they are based on knowing the individual preferences and retained abilities of the individual.
  2. Meaningful engagements make the individual feel successful – no trivia questions please!...I can never come up with the answers for those!
  3. Meaningful engagements are designed to create a “normal” environment – we’re not pretending we’re on a cruise ship where there is a calendar of constant entertainment and activities. Rather engagements offer opportunities to develop and grow and have purpose.

 So why don’t we…?

  1. Allow your team to bring their children to work so your residents living with dementia can help nurture them?
  2. Foster some rescue animals from the local animal shelter?
  3. Facilitate the residents to be outside for part of every day, except in extreme weather
  4. Start developing “bucket lists” with the residents?
  5. Have lunch outside on the patio?
  6. Have “Happy Hour” once a week with wine and appetizers?
  7. Cook a Sunday Brunch with mimosas and Eggs Benedict?
  8. Facilitate the residents to write poetry and hold a reading in your community?
  9. Do a yoga group with the residents in a local park?
  10. Facilitate the residents to write a book and have a book signing at your community?
  11. Give the residents cameras to take on outings and then have a photo exhibit in your community?
  12. Invite a preschool to join the residents for snack every day
  13. Form a dog walking club
  14. Have multi-sensory cooking classes?
  15. Develop an onsite organic farm
  16. Ask them, “How would you…?”

Form partnerships with your residents living with dementia and just have fun!

1: Just Dance with Me: an authentic partnership approach to understanding leisure in the dementia context”; World Leisure Journal;

Vol. 54, Issue 3, September 2012, 240-254

If you work in Assisted Living and want
To make your dementia care program even better,
Or if you need assistance in
Planning care for a loved one,
E-mail or call me for a free consultation

Have a great day!

Anne Ellett, N.P., M.S.N.
AEllett@MemoryCareSupport.com                                                                                           
949 933-6201

Posted in

Yes We Should…..Take Advantage of Free Memory Testing!

Posted on November 01, 2016 by Anne Ellett

Coming up in the month of November, there will be free memory testing at many locations throughout the U.S. Research shows that the most sensitive indicator of memory change is an individual’s own sense of alteration in their cognition.  We are able to sense a change in ourselves before other’s notice it or maybe we’ve been covering it up and not talking to anyone about it….

It is estimated that less than half of all people affected by Alzheimer’s disease or other type of dementia have been diagnosed.  A dementia diagnosis is life-changing for the person and their family members – knowing the correct diagnosis, as early as possible, can support a better future with more choice and dignity.

I frequently get asked, why get tested if there is no cure/treatment for Alzheimer’s disease?

There are many benefits to early diagnosis – for instance….

  1. Really, wouldn’t you want to know so you could talk with your family about your wishes, be involved in making plans, getting your legal papers organized, getting your finances organized, making sure you started those conversations with those you love?

  2. Delaying testing leads to problems that can be avoided. Not every type of memory change is due to Alzheimer’s disease.  There are many different causes of memory change and getting tested can be the first step to talking to getting additional testing as needed to obtain the correct diagnosis.  Some changes in cognition are due to reversible conditions - that would be important information!

    Putting off testing and a diagnosis until the symptoms are advanced results in less time to ask questions and absorb important information and ultimately less choice and less dignity.
  1. Time to educate yourself and your family about your diagnosis. There will be many questions to answer.  Are there people who can assist you?  Are there support groups that can be helpful?  Are there classes that would be useful?  Are there new and innovative care ideas?

  2. Time to review resources and choose care choices. As you and your family need a partner for care, where can you find options that offer choice and dignity?  Good care is not always that easy to find!  There are many types of care options out there and it can take time to search for various options.

  3. Advanced planning while you have time to review all the choices. Meeting with legal advisors takes time and often several consultations. There are several important documents to prepare each with significance. 

  4. Early diagnosis can give you an opportunity to participate in research trials and to be an advocate – these are valuable experiences that can benefit you and also allow you to contribute to future advances in care and treatments.

Screening for memory changes is free, brief and confidential.  You’ll be asked a few questions to assess memory, language and problem solving.  Memory screening will not give you a diagnosis but could be the first step towards getting an additional evaluation and important information.

Check with your local Senior Center, as well as local Assisted Living and other types of care centers for dates for free memory screening.  There is also a website that can help direct you to location for memory screening:  www.nationalmemoryscreening.org.

 

If you work in Assisted Living and want
To make your dementia care program even better,
Or if you need assistance in
Planning care for a loved one,
E-mail or call me for a free consultation

Have a great day!

Anne Ellett, N.P., M.S.N.
AEllett@MemoryCareSupport.com                                                                                           
949 933-6201

 

Posted in

Why I Love PT!

Posted on May 18, 2016 by Anne Ellett

I am such a fan of the benefits of Physical Therapy (PT) for people living with dementia! Actually, I’m such a fan, I would recommend it for just about everyone! And it is very underutilized…..


How many medical therapeutics can you think of that really have no “down side”? If you are prescribed a medication or undergo surgery, there are always risks. If you read the accompanying literature for any medication, the list of possible side effects and risks of interactions with other drugs is very lengthy. If you undergo a medical procedure or surgery, reading the consent form is frightening!

I guess there isn’t anything completely without risk, but in my many years of working with elders, I have yet to observe any adverse effects from receiving Physical Therapy.

I was working with a client recently, a very active 75 year old woman who has had two minor falls. She exercises several days a week by playing tennis and walking and is in good health other than her osteoporosis. Worried about her recent falls, she asked me to put together a program to minimize her risk of falls and injury.

The first thing I recommended was getting a prescription from her doctor for PT. “I wouldn’t qualify for any therapy,” she said, “I didn’t have any injury from my falls”. This is a common misconception that you only qualify for PT if you’re recovering from an injury or surgery. Not true! Medicare will cover a PT evaluation for gait and balance after a fall and probably some ongoing therapy.

A physical therapist can assess your current situation and will set individualized goals to improve balance, gait and restore functional mobility.

Many studies show the value of keeping people affected by dementia up and active. If you observe balance or gait changes, or even minor falls, talk to your health care provider to get some Physical Therapy. The benefits are great, the risks minimal!

 

If you work in Assisted Living and want
To make your dementia care program even better,
Or if you need assistance in
Planning care for a loved one,
E-mail or call me for a free consultation

Have a great day!

Anne Ellett, N.P., M.S.N.
AEllett@MemoryCareSupport.com                                                                                           
949 933-6201

Posted in balance, dementia, gait, medicare, physical therapy, PT

Dementia as a Chronic Condition

Posted on April 06, 2016 by Anne Ellett

I am consulting with a lovely Assisted Living community that is looking to update their Memory Care program. As I talk with their team, they tell me the stories of the families that tour and move in their loved ones. The Administrator seemed frustrated as she was telling me about the most recent resident to move in. She said he had recently gone through so much trauma! In the past year, he had lived in 2 different Assisted Living locations, and had also been in a hospital and skilled nursing facility and most recently, his wife called 2 days before he was getting ready to be discharged from the nursing home looking to relocate him again!
“Why can’t they make a plan? It seems like they only call when they’re in crisis!” the Memory Care Administrator expressed.
This story is not untypical as families with dementia are often left without guidance on how to put together a plan, reacting and making decisions only in a time of crises. Dementia is a long-term chronic condition that a person may live with for well over a decade. And unlike other chronic conditions, such as heart failure, COPD, or hypertension, there are not multiple choices of treatments and therapies the medical team can recommend to help manage the condition and improve quality of life for a lengthy period of time. It is up to the person affected and their family members to piece together a plan. So often, families don’t know where to start!
Consumers, meaning the person living with the dementia and their family members, may be unknowledgeable about what constitutes good care, what type of support may be needed, and where are the professionals who can assist them? And there is no single template of care that will benefit everyone – every person living with dementia has individual abilities, interests, and resources.
If we look at dementia as a long term condition, it makes sense to educate ourselves and make a plan, in order to avoid, as much as possible, reaction during time of crises. If decisions are made during crises, there will be less time for thoughtful choices and less choices to select from. And any crises, such as a hospitalization or relocation to a new place of care can be traumatic, requiring reorientation and readjustment. The only way to stay in control is to educate yourself and make plans.
If you or a loved one are affected by dementia, contact Memory Care Support for assistance in putting together a personalized plan of care to provide enjoyment, choice and dignity.

If you work in Assisted Living and want
To make your dementia care program even better,
Or if you need assistance in
Planning care for a loved one,
E-mail or call me for a free consultation

Have a great day!

Anne Ellett, N.P., M.S.N.
AEllett@MemoryCareSupport.com                                                                                           
949 933-6201

Posted in

Preventing Memory Loss

Posted on January 26, 2016 by Anne Ellett

Public awareness of Alzheimer’s and other dementias has increased fears for us as we age. According to a study by Met Life, for people over 55 years old, Alzheimer’s was the most dreaded condition after cancer.

As fears rise about developing dementia, so does the number of products that are touted as preventing it. Diets, supplements and brain stimulation games all promise to prevent or delay the start of dementia.

Some of the diets are a bit bizarre – Dr. Oz’s website includes information about “superfoods you must include in your diet to prevent Alzheimer’s and boost your memory” – his recommendations include foods such as chicken giblets, clams, and elderberries as necessities to prevent Alzheimer’s……

It is predicted the anti-Alzheimer’s product industry will follow in the footsteps of the multibillion dollar anti-aging, anti-wrinkle industry. And as we know, most of the anti-aging products are not worth the money we spend on them.

Along with supplements and diets, there are many electronic game-type products which promise to stimulate our brains and delay cognitive decline. One of my personal favorites (a great way to kill time while waiting at airports…) is Lumosity. However this “brain training” company has recently agreed to pay 2 million dollars to settle Federal Trade Commission charges that they deceived consumers with unfounded claims that the company's web-based games can reduce or delay cognitive impairment associated with age and other health conditions.

The quote from the FTC is very telling…. “Lumosity preyed on consumers' fears about age-related cognitive decline, suggesting their games could stave off memory loss, dementia and even Alzheimer's disease. But Lumosity simply did not have the science to back up its ads.”

All of us should remember that in the world of diets, supplements and computer games, the strength of evidence does not have to be much! There are not rigorous scientific trials testing the outcomes and manufacturers can make unfounded claims of their products. And yes, we’re all fearful of developing Alzheimer’s or other dementing illness.

Maybe someday there will be specific prescriptions to prevent these conditions but unfortunately, not right now. But science is giving us clues – with over 75% of dementias not linked to genetic causes, it makes sense that there are lifestyle choices we can make to help keep our brains healthy.

We know that some health conditions such as obesity, inactivity, diabetes, high blood pressure can all increase our risk of dementia and there are many choices we can make to lower our incidence of these conditions.

Like many other health conditions, it would be easier if we could just “take a pill” and not have to do any hard work ourselves but decades of research in heart health and cancer research validates that the most powerful intervention we can do to keep ourselves healthy often lies in our own lifestyle choices.
And guess what? Research also shows us that our body organs and systems do not exist in “silos” but all interact and influence each other. So what is healthy for our heart will be healthy for our brains.

Here’s what we know about strategies to reduce our risk of cognitive decline:

1. Physical exercise is good for our brains. In one long-term study of 18,000 female nurses, those who were most physically active appeared to stay cognitively intact up to 3 years longer than those who were inactive.

2. Don’t smoke…goes without saying…

3. Take up new cognitive challenges. Strategy games such as chess and scrabble, solving puzzles, learning a new language or musical instrument, taking classes, writing poetry, are just a few examples of activities we can start. Go wild - choose something new and interesting to you! In a randomized trial with over 2,000 older adults, those who received ten 60-75 minute brain training sessions showed benefits for several years.

4. Avoid or control health conditions such as diabetes, obesity, hypertension and high cholesterol.

5. Eat a healthy diet patterned after the Mediterranean, MIND or DASH diets. For more information on healthy diets, see my blog from Sept. 2015.

None of the above recommendations involve buying expensive equipment, games or supplements… Maybe instead of spending $50/month on vitamins and supplements, use it to take guitar lessons or learn to tango – now that sounds like fun!

If you work in Assisted Living and want
To make your dementia care program even better,
Or if you need assistance in
Planning care for a loved one,
E-mail or call me for a free consultation

Have a great day!

Anne Ellett, N.P., M.S.N.
AEllett@MemoryCareSupport.com                                                                                           
949 933-6201

Posted in

The Best Gift of All

Posted on December 02, 2015 by Anne Ellett

I invite you to read this holiday blog from a friend of mine, Pam Oldham, who writes about sharing gifts with her mother during the holiday season:

SIX LESSONS MOM TAUGHT ME ABOUT HOLIDAY VISITS

Many families will visit loved ones living with dementia this holiday season. Often, we make the mistake of trying to recreate family holiday celebrations of our youth. But over time, I’ve taken a new approach, thanks to lessons I’ve learned from my 87-year-old mother who lives in a long-term care facility far from my current residence.

Here are six lessons Mom taught me about holiday visits (plus a couple bonus lessons). I hope sharing them will help you and your family, too!

One really great present is all that’s needed. The family of my childhood celebrated Christmas and featured a massive stack of gifts under a tree. Carrying on that tradition is not longer appropriate for Mom. Too many gifts (and too many visitors) at once can be overwhelming to a person with dementia. Last year, I visited with Mom alone and gave her an interactive holiday ornament that came to life with lights and music at the touch of a button. Mom’s joy and wonderment was evident every time she pressed that button and the light and music show began. She played with the ornament every day during my week-long time with her.

Sing happy songs. Yes, sing and sing boldly. It doesn’t matter if you have a good voice or not. Holiday sing-alongs weren’t among my family’s traditions when I was a child, so I didn’t realize until recently how much Mom enjoys belting out holiday favorites. Sticking to songs with simple lyrics from old standards, like “Jingle Bells,” ensured Mom’s participation, to her great happiness. We began in the dining hall after dinner and continued singing all the way back to an activity room where a holiday event was about to begin for the enjoyment of residents. Hearing Mom’s laughter each time as we stumbled over lyrics warmed my heart.

“Selfies” aren’t just for the young. Mom first learned about smartphone cameras three years ago, and she loves our tradition of taking at least one official selfie during every visit. For our holiday pic, we don Santa hats that I bring and then we mug for the camera. As we check out the resulting images, we reminisce about past holidays and visits with Santa. I usually print the best image locally, frame it, and then give it to Mom before I leave for home.

Holiday lighting displays are still magical. Since Mom lives in a cold climate, it’s usually impractical to take her out to view neighborhood lighting displays by car. However, because her community is located in a residential neighborhood, displays can be viewed easily and warmly from inside the facility. We move our personal holiday party to an activity room with big windows facing decorated yards, turn out the room’s interior lighting, and then gaze with wonderment at all the beautiful lights outside.

It’s okay to be silly. Mom hates regimented exercise, but when I suggested that we take our song and dance routine to the halls of her facility, she eagerly agreed. I strapped some bells to her walker and we headed down the halls, singing holiday tunes and fancy stepping as went. Staffers and residents were delighted, and we had great fun. As an added bonus, the exercise invigorated Mom’s body and spirit at a time when she needed it most.

Your presence is the best gift of all. Visit regularly and often. During the holidays, a long-term facility can be a very lonely place for residents and staffers. Instead of planning one “big” celebration on a single visit, return several times during the holiday season for many smaller celebrations.

When I was a child, Mom taught me to be on lookout for people who need cheering up during the holiday season. Many long-term care residents don’t have any family members or visitors during the holidays. So, I always reserve time at the end of each visit with Mom to stop by open doors on my way out of the building. I greet each resident and wish him or her a happy holiday. Judging from their smiles and hand waving, this simple recognition brings them great joy.

Lastly, when you visit during the holidays, consider bringing some special snacks for staffers to share. They have sacrificed time with their own families to care for your loved one. It’s been my experience that cookies and veggie trays are especially appreciated.

Happy holidays!

Based in Austin, Texas, Pamela Oldham is a professional writer and care advocate for people living with dementia. Contact her at oldhamwriter@gmail.com and follow her on Twitter @pamelaoldham.

Posted in dementia, holiday visits, Pam Oldham, six lessons

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