Get Busy Living!

Posted on December 05, 2018 by Anne Ellett

 I attended the Green House Projects’  annual conference in Louisville last month and it was a pleasure to be with so many innovative and dedicated people working together to support people living with dementia (PLWD).  The Green House Project’s small home model is a disrupter to the impersonal clinical environment found in most skilled nursing facilities.  Their small homes create an environment that facilitates respect and personalized choices based on deep knowing of each elder living in the home.

One of the sessions at the Conference that really was amazing was hearing from Michael Belleville who is a dementia advocate and a PLWD.  Mike spoke very directly about what it was like to receive the diagnosis of dementia.  Not surprisingly, his physician didn’t offer much helpful information and Mike and his family were left on their own to figure out their future together. 

After initially “hiding under a rock”, Mike gained the strength to reach out and become socially connected again.  He credits his social activities as crucial to helping maintain his abilities and sense of purpose.  Mike not only reconnected socially, but he looked around to see how he could help others.  Mike has a tech background and volunteers helping others with their computer problems (yes please! Could Mike make a house call?) and he also started a new career as a dementia advocate, working with the Dementia Action Alliance.  So when you hear someone say, “Oh he has dementia, he can’t contribute, he can’t do anything, he won’t know the difference, he can’t…”, think of Mike and all of his talents and contributions!

Sharing his experiences with others helps get the message out there that even after diagnosis, you still have a life to live, you still have a voice and can still learn new skills!  Proof is that Mike recently discovered he is a wonderful watercolor painter and showed some examples of his work at the Green House conference.  You can see Mike here on the DAA podcast, This Dementia Life, discussing his new-found painting skills  .

So Mike said he felt it was important to “Get busy living!”  And my question to all of us, as care professionals, is whether it is our own fears and misperceptions that put unnecessary limits on PLWD and keep them from being the person they can still be, that keep them from “living”?

If you work in a nursing home or assisted living or an adult day care setting, look around you at the people who live there.  If the first thing that comes to your mind is the list of their losses and inabilities, doesn’t that indicate you are allowing the diagnosis of dementia to define them? Are you seeing them as an individual person or are you only seeing their dementia?  I know as a nurse I’ve been trained to assess and focus on a patient’s debilities rather than their strengths.

Instead, try looking at each person as an individual with abilities, interests and talents that we may not even yet know about.  What can you do to support them to have choices, to try new experiences and express themselves?  That would be a great gift to give in 2019 to PLWD!  

 

Happy Holidays and wishing everyone the very best for the New Year!   Anne

Posted in dementia action alliance, dementia life podcast, get busy living, greenhouse project, michael belleville

Searching for Excellence in a Memory Support Program

Posted on March 07, 2018 by Anne Ellett

I often get asked to help the family of a person living with dementia (PLWD) to assist in choosing a location where their loved one can reside.  These families want the best and have probably already visited several locations to tour their “Memory Care program”.  These families are confused because it seems that every type of long-term care or assisted-living location now says they are experts in memory care and have a wonderful program for PLWD.  How can they choose the best location?

If you tour various locations or go on their websites to view their information, certain words or phrases pop out such as:

Care - yes, you would want good care but not at the expense of making the PLWD more dependent than necessary.  The concept of caring for someone puts that person into a dependent role.  The right environment doesn’t just “take care” of but rather offers support – we want to support the PLWD to use their retained talents and skills to be the most independent and self-sufficient as possible.

Safety - safety is a big factor in how professionals develop programs for PLWD.  A priority is “decreasing risk” and keeping everyone safe.  We would all want any PLWD to be safe and experience no harm.  But unfortunately, if the priority is on risk reduction, concepts such as choice and dignity for the PLWD may not be permitted.   Excess focus on risk reduction leads to what could be considered a surplus of safety. The PLWD may be encouraged to sit in the recliner all day because if they were to walk around, they might fall.  If a PLWD wants to go outside, they may be labeled as “exit seeking” and prescribed an anti-psychotic medication to sedate them.  Developers of programs for PLWD should think of walking, exploring, wanting to have new experiences as normal adult expressions and needs.  Safety is important, but not at the sacrifice of dignity and individual choice.

Person-centered - This phrase has become so common, it is difficult to know exactly what it means.  Care communities will say they have person-centered care, but if you happen to visit in the early morning, it seems that everyone in their memory care program is eating their breakfast together at 8 a.m.  How can this be if it is person-centered?  For example, I personally like to wake up early, but I prefer not to eat anything for a couple hours.  Please don’t try and get me to the breakfast table at 8 a.m.  Rather than person-centered, I look for an individual approach that is relationship-based for every PLWD.   A relationship takes time to develop and also depends on stability of staffing.  A good question to ask is “What is your staffing turn-over rate?”

Engagements - this word has generally replaced the previous term “activities” but still refers to group-type activities such as listening to musical entertainers and current events, and games such as bingo.  Some entertainment is fun but really, do any of us look forward to group bingo or a Dean Martin impersonator?  I encourage families and PLWD to search for supportive environments that can offer purposeful experiences that will help maintain and build new abilities.  Are there opportunities for the PLWD to try new things, to not be labeled by their diagnosis, but rather have choice and even take some risk? For example, does the local art museum have programs for PLWD to learn about exhibits and try their hand at new art projects?  Would the local high school theater club come in and rehearse their latest production for the PLWD?  Is the PLWD a cat lover and could they assist in fostering a litter of kittens?

It is difficult to make a good choice just reading information – when choosing a location, I strongly encourage visiting in person, several times if possible and at various times of the day.  Look for locations that offer:

  • Support
  • Choice and dignity
  • Relationship-based
  • Purposeful experiences

 And put yourself in the place of the PLWD – is this the place you would want to spend every day?

Posted in living with dementia, memory care support program

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

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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

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