Here come the holidays….again

When you are caring for someone with Dementia holidays are bittersweet.  There are things you look forward to as always but the Dementia adds an element of the unexpected.

Here are a few reminders as the holidays approach.

  • Plan ahead – don’t wait until the day of the holiday to figure out what the needs of the person with dementia might be.
    • They may not be able to handle to noise and hub bub of a family gathering – have a quiet place prepared in case they need a reprieve.
    • They may need to be reminded or taken to the bathroom to avoid embarrassing accidents.
    • You may need to remind them of the steps in certain parts of the holiday traditions
  • Be flexible – allow for the possibility that your plans may not go as expected and be willing to change them to accommodate your loved one’s needs.
    • You may need to consider ending an event earlier than anticipated
    • Have someone lined up to take your loved one home when they have had enough.
  • Do familiar holiday activities that have been lifelong to facilitate memory retrieval and their ability to participate.
    • Making a wish on the turkey wishbone
    • Singing Christmas Carols
    • Decorating the Christmas tree
  • Prepare the rest of the family and friends you will be with for the changes in your loved one either through a phone call or a letter before the holiday gathering so they are able to respond well and will not be taken off guard.  This is especially important if the changes over the past year have been significant.

Holiday times are important to all of us because they are times of family and friends gathering together.  Don’t get caught up in the expectations and busy-ness of this time of year.  Take the time to focus on the people who make this time of year meaningful.  People are the  important part of the holiday not the decorations, gifts and traditions.  If this would be your last holiday with your loved one would it change your perspective on what the holiday should be like?  Provide them with meaningful activities they can participate in without being overwhelmed.  A low-key approach to the holiday season will not enhance or return the memories of the person with dementia but it will build wonderful memories for you with less stressChris Hutchison_Pennsylvania Snow Storm_YEFlSGVc.


Transitions in Dementia Care part 2

One of the biggest issues in caring for someone with dementia is knowing when to tell them about a change that is coming.  Unfortunately many people with Dementia struggle with anxiety because their world is no longer the safe predictable place it used to be – at least not to them because they cannot remember the things that to us are “normal” and predictable.

I have told families not to let their loved one know about a change too far in advance for this very reason.  There was a woman that lived in regular personal care in the CCRC that I worked at who needed to transition to the Secure Dementia Unit for her own safety.  Staff had encouraged her son to wait until the day of the move to tell her  but not fully understanding that she could not comprehend that in the same way he could he told her weeks in advance.  For this dear lady those weeks were filled with sleepless nights, packing things up and worrying about the move.  All she could remember was that she was moving, she didn’t know when because time no longer meant anything to her so everything was immediate.  This is what triggered the frenzied flurry of activity.  It was so bad that one of the staff actually found her up on a chair taking down the drapes!  They weren’t even hers, they belonged to the facility but she didn’t know that.  Fortunately she made the move without falling off the chair and breaking her hip first!

Transitions are hard for all of us but when you no longer have the capacity to understand time which is a very abstract concept and you no longer have the ability to organize your thoughts, or your day, knowledge of change serves only to create anxiety.  Even though it sounds cruel to not tell someone of a change it is one of those “cruel to be kind” moments.

Another concept with change is that regardless of what the change is the person with dementia often looks to the person they trust the most, their caregiver, to know how to respond.  This puts the burden of success or failure on the person who is already the most stressed to begin with in this situation, you.  Persons with dementia are always reading your body language, facial expressions and the tone of your voice.  If you come across positive and hopeful it is better than having them read your anxiety from irritated answers and short-tempered responses.

Transitions are also a time to ask for help.  The day we moved my mother in law from her apartment into the Personal Care Facility we chose not to tell her.  My sister-in-law was prepared ahead of time to take her shopping, a special treat and take her out for lunch.  While we worked on moving her things and making her new room homey for her she was enjoying a lovely day out.  When we were finished they arrived and we ushered her into her new place and she was delighted.  She was overwhelmed that we went to all the trouble of setting things up for her.  She was happy for her day out and was thrilled with her purchases.  The entire experience worked to make the transition positive

A word of caution – not everyone is the same and you need to  adjust  the transition experience to accommodate the needs of the person.  But it is important to remember that telling them too far in advance can serve to agitate them and everyone involved.

“You cannot control what happens to you, but you can control your attitude
toward what happens to you, and in that, you will be mastering change rather
than allowing it to master you.”
― Brian Tracy

Transitions in Dementia Part 1

Change is difficult. Change is difficult for everyone.  Change is more difficult for someone with Dementia.  It’s hard to adjust to something new if everything is new to you and you are unsure about what has gone before.  This makes it more difficult for caregivers who feel the pain of change themselves and then postpone the inevitable, sometimes until it is no longer feasible.

Part of planning for the future when you are a caregiver is figuring out what “criteria” or change in the daily status quo will mean moving to the next step of the process, the next level of care.  That next level of care may mean finding more help to support you in your current home situation or it may mean moving to a residential, assisted living or personal care setting.  Thinking about this ahead of time can help you move ahead at the best time for both you and your loved one.

Some things that I have seen trigger  the need for changes to be made by family caregivers are:

  • Wandering
  • Incontinence
  • Inability to walk
  • A hospital stay by either the person with dementia or their caregiver
  • Behaviors that interfere with safety of either the person with dementia or their caregiver

Think about what your capabilities and boundaries are.

  • When does the need of the person you are caring for interfere with your own health?
  • When does your inability to care for them because of your own physical limitations, their physical or behavioral limitations, or their increasing care needs point to a need for something more?

Take some practical steps

  1. Do some research – (Start by asking friends and family if they are familiar with any of these providers word of mouth and the personal experience of others is often your best measure of an organization’s services)
    • Contact facilities and see what you can afford and who can provide what you anticipate needing in the future – you may need to fill out an application and provide financial information to solidify your decision even if you anticipate waiting a while before pursuing this option
    • Contact Agencies that provide in home care and find out what that would cost and whether there are things you need to know about initiating that care.  Do they only enroll new clients on weekdays?  What happens if you have a crisis on the weekend?
    • Contact Adult Day Facilities – this is a good stop gap measure.  Often having your loved one go to a day program gives them meaning and purpose as well as giving you a break.  There are often added services like bathing/showering, meals, medication administration etc.,that can occur at these places too.
  2. When you figure out your preferred plan write down.  Include contact names and phone numbers.
  3. Contact your/their POA and let them know what your plans are for your loved one if something should happen to you.  Provide them with a copy of your preferred plan.
  4. Share your plan with the person or persons next in line to care for your loved one if you are not available. This is not always the same person as the POA.  If you have a private caregiver coming to care for your loved one they need to know who to contact if something should happen.

While working in a CCRC I saw caregivers postpone a move to a higher level of care thinking that was best for their loved one.  Sometimes it was unclear to me who they were holding out for,the person with dementia or themselves.  I do know there were multiple times where individuals completely skipped over a level of care because they no longer met the criteria.  This was most frequent with couples who were in Residential Living where the spouse was the caregiver though it did occur with adult children caregivers who were still afraid of their parents.  Fear of the anger of the person with Dementia if they were moved, fear of loneliness and being alone, fear of earlier financial need because of the cost of the next higher level of care were all factors in this postponement.  Many individuals skipped right over the Personal Care setting and went straight to Healthcare which was a more appropriate setting for them.  The struggles as they continued to try and function in a setting that did not provide the supports they needed accelerated their progression and sent them to this higher level of care faster.

Plan ahead for transitions – it will save you both unnecessary stress.

Click on the link below for a free printable worksheet

Future Planning Worksheet


“We have to make decisions,

and we can’t make them if they’re based on fear.” 

 Madeleine L’Engle


Next time….Making the actual transition

Dementia Wandering – It Could Happen to You


Some caregivers fear this behavior more than any other.

Others think “It will never happen to my loved one.”

There are many misconceptions about wandering and what causes it.

Misconception #1

“If someone doesn’t walk a lot before Dementia they will not wander now with Dementia.”  The truth is that if the person with dementia can walk they can also wander.  The level of confusion that occurs with dementia can motivate an individual to do things they would not do if they could think clearly.  Wandering usually occurs because the individual is looking for someone, or something or a trying to find a feeling of belonging a.k.a. “home”.  Any individual with Dementia who asks to go home, looks for their spouse or children, tries to go to work at a job they no longer have, cannot remember where items are that are important to them has the potential to wander.

Misconception #2

“If someone “knows” where they are they will not wander.”  With dementia they may know where they are one minute and forget the next.  It is important to be careful about trusting their memory to retain any information.  Assumptions should be made on the side of safety not the side of risk.  When working on a secure dementia unit one of my pet peeves was family members who would come and pick up mom or dad for an outing, take them off the unit and leave them unattended in the hallway while they used the bathroom.  Every time I ran across one of these residents in the hall alone and asked why they were there without fail they would tell me they didn’t know.  If you don’t know that you are waiting for someone then there is no reason to wait if you can’t remember what or who you are waiting for.  This is a situation set up to encourage wandering.

Misconception #3

“The weather is nice so the risk is not high even if they do wander.”  Nice weather does not eliminate the risks of walking in front of traffic because they cannot remember pedestrian etiquette.  Lovely weather does not prevent them from losing their balance or footing on uneven surfaces or pavements causing falls that they cannot problem solve about how to manage or accommodate.  God forbid they should fall near or in water or hit their head.

Misconception #4

“We have visited our daughter many times in the past.  She’ll be fine at her house.” A new environment is overwhelming even if vaguely familiar.  If you have ever gone on vacation and woken up in a strange room wondering where you are you have just a small inkling of what dementia feels like.  The difference is people with Dementia feel that way in familiar places so the stress of the unfamiliar is very traumatic.  A new environment can trigger a search for the familiar, often by wandering.

Misconception #5

My loved one  goes for a walk alone everyday and  they always follow the same route, they are safe.”  What if something on the route changes.  Something miniscule like a different color siding on a house that was a landmark or a tree being taken down that was a path marker for your family member and could throw off their sense of direction.  People with dementia should not walk alone for any distance out of the sight of the caregiver.  If you are taking this risk be ready to drop everything and search for them if they don’t come home as expected.  The far better and safer choice would be to walk with them.

Misconception #6

“They will not go far because they are too feeble otherwise.”  People with dementia do not recognize physical limitations like thirst or fatigue or shortness of breath. They go out in the winter without coats and wear coats in the dead heat of summer.  They continue to do what they do because of whatever underlying thought is motivating them. Thoughts like, “I have to find my children”, “I have to get to work”, “My parents will be mad if I don’t get home soon.” It is difficult to predict what motivates people since it is so personalized.  An emotional trigger is a powerful motivator.  Don’t underestimate the trouble and the wandering that can cause.

Wandering is a scary thing for both the caregiver and the person with dementia. More than 60 percent of those with Alzheimer’s or another form of dementia will wander, and if a person is not found within 24 hours, up to half of individuals who wander will suffer serious injury or death.  This is truly a situation where an ounce of prevention is a worthwhile thing.



Dementia in the Emergency Room -Part 2

Dementia is confusing enough to live with without being in an over-stimulating environment like the ER.  The thing with the Emergency room is that the wait is long between interactions with staff as tests are done and the results are read.  As I said before Dementia is not a disease that helps someone wait patiently.  Waiting is hard for even the most patient of us but if you don’t know where you are or why you are there waiting is impossible.  You “just want to go home”, and will do your best to get there even if you shouldn’t be.  Remember wanting to go home means, “I don’t know where I belong”.  I cannot emphasize enough the need for a familiar face who knows you when you are in an unfamiliar place and cannot remember things.

My recent trip to the ER with my parents occurred after my Mom had an episode of weakness and almost passing out.   That is frightening enough to have to deal with but when someone passes out they don’t remember the events that occurred like those around them do.  Several times while waiting for test results Mom asked what we were waiting for and she felt fine so why did we have to wait.  Meanwhile my Dad and I were waiting and hoping for answers about why this episode occurred.  We finally did get answers but they were really not answers since nothing was found and they were planning to send Mom home.  That was fine with all of us except that after sitting on a stretcher for 4 hours in the Emergency room they expected to discharge my 80-year-old mom to home without even standing her up to see if the event would repeat itself.  Because I was there I asked, “Aren’t you going to get her up and see if she can walk okay?” Which was followed by the support staff coming in because, “The Physician’s Assistant wants her to walk before she is discharged!”  If I had not been there I have no doubt that she would not have been walked or even stood up at the side of the stretcher.  They would have discharged her without ever getting her up.  I am sure of this because I had residents returned by ambulance to a Personal Care Dementia Unit after falls or similar passing out episodes that sent them to the hospital for evaluation without ever being off the stretcher.  Sadly some of them were not able to walk and it created all kinds of issues to have them at the wrong level of care even temporarily.

Questions you should think about when in the ER with your loved one

  • Which procedures will be performed and how? What are the risks and benefits? What are the expected results?
  • What is the expected length of recovery? 
  • Is assessment or treatment available at an outpatient clinic? 
  • Is hospitalization required? How long ?
  • If anesthesia is used, how will this affect cognition? 
  • What are the visiting hours? Are extended hours available?

Make sure that all treating physicians and medical professionals are aware of the Dementia diagnosis.  If the person with dementia has difficulty communicating, offer suggestions to medical staff about what the person may want or need.

Hospitals are not friendly places for people with Dementia.  Make their stay as comfortable as possible by clearly communicating with the staff what works for them and what doesn’t.  None of us function well when we are sick or in pain but when you are sick or in pain with Dementia it is even more traumatic and debilitating.

Most importantly know what is next.  Do not leave the emergency room to go home without a follow-up plan. If you are sent home, make sure you have all instructions for follow-up care.

Your loved one with Dementia will be treated better and have a less traumatic experience if you follow these guidelines.

Follow the link above to get  a free topic sheet with some good tips from the Alzheimer’s Association on how to navigate a hospital stay for your loved one.

Dementia in the Emergency Room – part 1


A person with Dementia or any memory loss should always be accompanied by someone they know when going to the hospital.

In the past two months I have been to our local ER twice.  Once with my mother and once with a friend.  The ER is a scary place, even if you do not have memory problems, for many reasons.

When you go to the Emergency Room it’s because there is a problem, a serious problem.  Often you don’t know what that problem is so you are waiting and hoping for answers that may or may not come by the end of your visit.  If you have memory problems you may not remember the precipitating event that sent you to the hospital in the first place which really limits what the ER staff can do for you if you are alone.  The question “why are you here?” is answered with “I don’t know”.  Especially if the event that occurred was witnessed by others but you can’t remember that it even happened.

It doesn’t matter how good ER staff are they can only work with the information they have.   ER Staff are trained  and expected to deal with the emergent issue at hand not all the extraneous other problems someone has.  When someone with Dementia is asked if they have pain they may say no or they may refer to a pain that is chronic but not the reason they went to the hospital in the first place.  Another problem might be the total lack of memory of the most recent occurrences preventing them from remembering why they are even there. The person with Dementia needs an advocate, someone to speak for them, who knows their history and will correct the misstatements and fill in the gaps of the story so the issue being addressed is the one that is that triggered the visit.

The other thing to remember is that a visit to the ER is not quick.  Emergency rooms work by triage – the most life-threatening emergencies are the first to be dealt with- and that is appropriate.  This leaves the non life-threatening emergencies waiting longer for treatment.  “Waiting well” is not a trait that many people with dementia have.  They forget what they are waiting for.  They may try to leave.  They get more and more confused the longer they are left alone in the noisy chaotic strange ER environment.  The calm presence of a familiar face is more than comforting it helps keep them grounded in the moment.  If there is no one with them they can become agitated as they become more frightened and end up being sedated with medication they may not need otherwise .  This can leave them at a higher risk for falls and increasing confusion as the sedation wears off.  This can be a particularly bad situation if you return them to their home environment after the ER visit and they are too sedated to walk.

Let me offer a cautionary statement about assuming that if they live in a facility that the facility staff have sent all the pertinent information with them to the ER.  That may or may not be true but a lot of hands touch that information and information can be easily misplaced or overlooked when there is no one there to speak for the person.  Do not assume that because they live in a facility they do not need your presence in the ER with them.

Part 2 of the ER visit coming soon.

Click on the link below to access the National Institute on Aging brochure about Dementia and hospitalizations.

Weather & Dementia – Rain or Shine Can Make A Difference!

Today in my area of Pennsylvania it is rainy and cold.  It’s the kind of day where staying in bed seems like the best idea in the world.  If I feel that way with out a Dementia diagnosis imagine how someone with dementia perceives this day.

  • “It’s kind of dark out it must be evening.”
  • “I have no energy, it must be the end of the day!”
  • “I don’t feel like doing anything.”

These are all typical feelings, conclusions and even statements by people with Dementia on a rainy day.  We all understand that.  Some days you just have to get up and “do the next thing”.  The only problem is with dementia you don’t always know what the next thing is.  These are the days that the routines I spoke about in my earlier post make such a difference

And then there is the Sundowning!  “What is that?” you may wonder.   Sundowning is a unique confusion that is brought on by Dementia as the sun goes down in the evening.  It’s common for people with Dementia especially those with Alzheimer’s disease to experience increased confusion, anxiety, agitation, pacing and disorientation that starts at dusk when the sun goes down and continues throughout the night. This behavior is commonly referred to as “sun-downing”.  Even worse this behavior can totally throw off the body’s sleep-wake cycle, which just causes more behavioral problems late in the day and sometimes sleeplessness at night.

After years of working in a dementia unit I observed that sundowning can occur on rainy days or cloudy winter days just as easily as it occurs as the sun goes down on a typical day.  If sundowning is a response to darkness that makes perfect sense.

How do you cope with Sundowning?

  • Turn on the light.  Keeping your house well-lit will limit confusion.  Some people feel that  Ottlite brand lamps work best for this because they mimic actual sunlight. (see links below) Marked  improvement has been noted in many individuals with such light exposure so if they do puzzles put an ottlite by the table.  If they read put it next to their chair. You get the idea.
  • Stick with the daily routine- The routine adds structure and predictability as well as providing an essence of “time” to those who can no longer grasp the concept of time.  If they don’t recognize the time of day but they do recognize that after lunch we always go for a walk then maybe a trip to the mall on a rainy day to walk indoors is a good alternative.  They will then get out, get exercise and not doze off in the chair reducing the likelihood of increased confusion and poor sleep at night.
  • Make notes about when sundowning occurs so you can figure out what triggers it.  Is it the weather? Too much stimulation during the day?  Not enough stimulation during the day?  Lack of exercise? Loud TV or Music? Certain activities?Raising your own awareness of environmental triggers can reduce your frustration as you do your best to offer what your loved one needs each day.  You can’t avoid what you don’t know about.


Dementia Future – Is there any hope?

2017-facts2017_ Click this link for the latest Facts and Figures

The Alzheimer’s Association has just published the 2017 facts and figures.  It’s a bit daunting.  Alzheimer’s Disease is the 6th leading cause of death in the US. Not only that but we currently have no cure.  We do however have top researchers and scientists working furiously to find one.  So what do we do in the meantime?

Even though there is no cure there are risk factors that you can control.

Dr. Paul Nussbaum who is a neuropsychologist out of the University of Pittsburgh has done a lot of work in this area.  He strongly recommends the following specific tools towards maintaining and improving brain health.

  1. Nutrition:  Eat more “good” fats including Omega-3 fatty acids, more fruits and vegetables, and fewer “bad” fats and processed foods.

  2. Socialization:  Stay involved with life and develop a personal mission and hobbies along with building networks of family and friendships.

  3. Physical Activity: Be mobile and active.  Walk, play, run, garden, exercise, bike, hike.  These activities can help reduce the risk of dementia later on in life.

  4. Mental Stimulation:  Learn a second language, learn sign language, travel, play board games, and either play or listen to music.

  5. Spirituality:  Slow down, meditate, and learn relaxation procedures.  Identify what your stressors are and how they affect you and then identify ways to handle them.

Over my lifetime the public has been educated significantly on heart healthy behaviors to prevent heart disease.  For many of us they are not easy behaviors to initiate and maintain but the good news is that what is good for your heart is also good for your brain!  This means no newly introduced activities are required  but rather living a heart healthy lifestyle will also help your brain.  Sounds simple doesn’t it? Eat right.  Exercise. Get enough sleep. The bottom line is every time your heart beats your brain gets 25% of the blood/oxygen that is sent out from your heart.  That means anything that improves the circulation and the oxygenation of your tissues is beneficial to your two most vital organs your brain and your heart.  Exercise is the most important.  This also means that if you are sedentary your risk of dementia is even higher.

In his book “Brain Rules” John Medina states that “Your lifetime risk for general dementia is literally cut in half if you participate in physical activity.  Aerobic exercise seems to be the key.  With Alzheimer’s the effect is even greater: such exercise reduces your odds of getting the disease by 60%!”

That’s a huge risk eliminator.

Make a promise to yourself.  Increase your activity.  Improve your heart and brain health Prevent or at least delay the onset of this insidious disease.

Why Routines Are So Important for the Person with Dementia….

Take a moment and think about your day.  Do you do the same things every day at certain times?  Do you have certain activities that you always follow with another activity?  We don’t often think about that because it is routine.  Routine according to Merriam Webster is “habitual or mechanical performance of an established procedure”. 

There are multiple reasons why routine is important.  Human beings seem to thrive on routine.  We like to do the same things over and over.  When I wake up in the morning my second stop after the bathroom is the kitchen to make coffee.  I like to start my day with a leisurely cup of coffee.  What if I couldn’t remember that?  What if all I knew was that something isn’t “right”?  It would make me cranky and difficult.  However if someone who knew me well, my husband or one of my kids was with me they would know that “Mom doesn’t do anything before she has her coffee.”

Another example would be as you go through your evening and get ready for bed do you brush your teeth before or after you put on your pajamas (assuming you wear pajamas).  In the shower do you wash your hair or your body first?  Even how we eat is routine and individualized.  Some people eat one thing at a time, some circle the plate taking a bit of everything and then repeating the circle.  Why does this matter?  Well normally it doesn’t but when you have dementia small details matter.

Developing a routine provides a sense of comfort and normalcy to a world that is anything but comfortable or normal for the person with Dementia.  If you do the same things in the same order day after day it provides cues and direction that are otherwise absent.  If a person  gets up everyday and the first thing they do is brush their teeth they are more likely to continue that habit when they have Dementia, as long as the environment is similar and the “tools” are readily available.  If a person with Dementia has a habit of walking everyday and they fall and break their hip.  Post-op they are more likely to do well because they will often forget that they broke their hip but “remember” that they walk everyday because that is their routine which tends to trigger a kind of auto-pilot or activity without thought.

So what should a routine look like?

Try to keep the days events in the same order

  • Get up
  • Breakfast
  • Shower/Dress
  • Morning Activity of the day
  • Lunch
  • Nap
  • Afternoon Activity of the day
  • Supper
  • Evening Activity of the day
  • Brush teeth/Get ready for bed
  • Go to bed

You can see that the bolded activities would change and the others stay the same day in and day out.  Your routine may look different from the one listed above as long as it has the basic structure of the same activities in the same order.  You will enable your loved one to stay independent longer if they have a reliable consistent routine and that’s best for everyone involved.

Where can a Dementia Caregiver find support?

Caring for someone with memory loss is more than a fulltime job.  Anticipating their needs, their mistakes, their actions makes constant vigilance a necessary part of your existence.  This is neither good or bad it is just reality.  You are continually thinking about the things you need to alter for their safety in the same way that you would prevent a small child from getting into trouble by limiting the possible problem areas and “child proofing your home”.  All of this takes exorbitant amounts of energy.  Where do you go to recharge?  Where do you go for support?  Who can you talk to that understands what you are experiencing?

One of the things that support group members often talk about is how most people don’t understand what they are dealing with.  Family members see mom or dad functioning fairly well in their presence and may even think you are exaggerating the symptoms and problems.  Friends you play cards with or go out with can do the same – or they see the symptoms and cannot deal with the changes and avoid you all together. These are only a few of the reasons why a support group is a good idea.

The Alzheimer’s Association offers support groups to Caregivers all over the country.  You can actually search by zip code and find one near to you.  It is good to go to a support group with some credibility behind it and the Alzheimer’s Association provides training and resources to facilitators .  Use this link to find  a local group you can connect with.

Here are some benefits of attending a group like this

  • You find friends who are experiencing similar problems with their loved ones
  • You share what works and what doesn’t and can learn from other people’s struggles
  • You gain insight and information that help you to cope with the day-to-day stress of caregiving.
  • You no longer feel alone

Having support will help you get through the days that are long and overwhelming. Knowing you’re not the only one dealing with the problems you face daily is like a light at the end of a long tunnel.  Find a support group.  Find Support.  You are not alone… you are one of many. In a supportive community you will find hope.

“We have all known the long loneliness

and we have learned that the only solution is love

and that love comes with community.” 
 Dorothy Day