Tag Archives: Dementia Live

Top Ten Tips for Improving the Dining Experience for Persons with Dementia

Although persons living dementia may have challenges with eating, such as chewing, ability to taste or smell food, or remembering how to eat, the dining experience can have a tremendous effect on their socialization, how much they eat and if the time they spend eating is enjoyable or frustrating.    Improving the dining experience is certainly possible, whether in a community-based setting, a hospital in the home or even in a restaurant.

Understanding their challenges is the first step to making positive changes.

Let’s look first at noise.  Of all the senses, hearing is the one that has the most significant impact on people with dementia in terms of quality of life.  This is because dementia can worsen the effects of sensory changes by altering how the person perceives stimuli, such as noise and light.

Dining areas are often challenged with multiple layers of noise that can cause unrest and agitation.  If a TV or radio is on at the same time that family (or staff) is talking, dishes cutlery clattering, together this can lead to a heightened sense of disorientation.  While it is not possible to remove this noise altogether, it is certainly possible to observe how much noise is taking place.  Perhaps a solution would be to have quiet, calm background music,  refrain or limit conversations, and certainly make extra efforts to reduce the clatter of dishes.

As sensory simulation changes, loss of taste and ability to smell are often adversely affected.  This may be due to the brain changes taking place or use of medications or a number of other reasons.  This means we may have to get more creative in how food is displayed, so that is visually more appealing, even though they cannot taste and smell as sharply as they once were able to do.

Various studies have been done that show the color of the plate had a significant effect on how much food was consumed – as much as a 25% increase by simply changing the plates to a bright canary yellow or red.

While we are talking about the color of the plate, let’s also think about the food that goes on the plate.   A person living with dementia may not have visual/spatial abilities that a normal person has.  In fact, as dementia progresses, vision changes.  This is even more reason to make food more colorful and appealing.  Keeping in mind that they sometimes don’t eat as much as one normally would, due to a number of reasons, focus on the quality of food over quantity.  Having a variety of colorful food that is easy to chew, in bit size pieces, mashed or pureed (if needed), may make it much more appealing for a person with dementia to want to eat and have the ability to eat independently or with minimal assistance.

“This looks delicious!”  Simple encouraging prompts to eating can have positive effects on another person.

Slow down.  Allow the person to eat at his/her pace.  This will vary greatly depending on their abilities.   In almost all cases, persons with dementia are going to take longer to chew, manipulate their utensils,  and simply process the dining experience.  That’s okay.  The goal is nutritional intake,  engaging in a pleasant experience and having the person leave have the emotional takeaway that eating is something that they enjoy.

We talked about noise and how overstimulation can have negative consequences, especially during mealtime.   Some people with dementia will enjoy the company of others and having conversation, but know that often too much conversing can distract them from the task of eating.  Be mindful that each person is different and this may also change for them from meal to meal depending on the environment and other factors.  That said, when they start eating may be a good time to limit conversation so they can concentrate on their task.

Practicing patience, empathy, and understanding is always the goal when helping a person with dementia.  Nutritional intake is important, however, we have to read the person’s body language and take cues.  If they are not receptive to eating at a particular time, then simply accept this instead of forcing something that may lead to behavioral expression.

Summary of Top Ten Tips for Improving the Dining Experience

  1. Reduce over-stimulating noise.
  2. Consider soft background music appropriate for that person.
  3. Replace white plates with colors like yellow or red.
  4. Present colorful food and focus on quality, not quantity.
  5. If needed, present food in bite-sized pieces or mashed.
  6. Use encourage prompt such as “This food looks delicious!”
  7. Slow down and practice patience!
  8. Limit conversation when the person begins to eat.
  9. Have a goal of making the dining experience pleasant while focusing on nutritional intake.
  10. Be flexible and understanding that eating times may often need to be adjusted.

Pam Brandon is President/Founder or AGE-u-cate® Training Institute and Creator of the internationally recognized Dementia Live® Simulation Training program.  

http://www.AGEucate.com

 

 

 

 

 

 

 

 

How to Put Caregiver Coping Skills into Practice – Today!

Stress is simply a part of life.  Think about each and every stressor that affects our lives almost daily.  Here are just a few to think about:  traffic, annoying telemarketing calls (what telemarketing calls aren’t annoying?), junk mail, the news, job demands, airline delays (let’s just airports in general), and the list goes on.  Life is complicated, stressful and caregiving is even more so on just about every level.  So instead of talking about eliminating stressors, let’s talk about how caregivers can put coping skills into practice so that falling into the traps of anxiety, depression and more is eliminated or decreased as much as possible.

The reason I call it coping skills is because it’s just that.  We have to learn skills and approach it as such.  Learning new ways of dealing with, reacting to and accepting things all is wrapped up in how we learn to cope with situations that are for the most part out of our control.  When we learn to cope well, we are healthier!  That’s right – stress causes all kinds of negatives, such as high blood pressure, heart disease, overeating, alcohol and drug use, weight gain or loss, and overall it makes you not a nice person to be around.

How we seek and apply solutions to stressful situations or problems that emerge is all about applying coping skills – that is healthy coping skills.  Some coping skills that are not healthy and can perpetuate even greater stress include

  • defensiveness
  • avoidance
  • self-harm
  • passiveness

Believe it or not, we can practice coping skills with our conscious minds.  In other words, we can learn new mechanisms for dealing with what comes our way.  And we can choose how we will react to the stressors in life.

As a champion for you caregivers, I have to be perfectly honest and tell you that I’m giving you advice that I did not always heed myself.  Probably because in the midst of the chaos and stress I was so caught up in it, I chose not to stop long enough and listen to what my body was telling me or what others had to say.  Coping skills have been around for ages, but 20 plus years ago there wasn’t quite as much talk about the health risks of caregivers.  There just weren’t as many of us around.  Now – well – caregivers of aging parents, spouses and other loved ones are EVERYWHERE.

So let me give you some sound advice from the years I have had in helping others walk the caregiving journey.

  • First, learn as much you can about the person you are caring for!  Learn about their illness (thank goodness for google), accompany them to doctor visits and have good questions, bring a notebook and good heavens, keep everything together in a 3-ring binder so you can stay organized.  Realize that as a primary or secondary caregiver, healthcare advocacy and management is a big part of your job, so learn to be curious, ask questions and above all, have your loved one’s best interest at heart.
  • Start now on a daily practice of meditation, prayer, yoga, exercise for stress reduction (whatever that might be for you), and learn breathing techniques for relaxation.  I want to stress proper breathing since you can practice this anywhere and throughout the day.  Proper breathing enhances relaxation, reduces stress and has a lengthy list of long-term health benefits, supporting our nervous system, supports physical, mental and emotional health and well being.  See the Foundations of Yogic Breathing workshop
    for learning new coping skills simply through deep breathing.
  • Don’t be a caregiver martyr.  I apologize for being so blunt, but as a self-confessed martyr myself, I feel the need to share how destructive this can be to yourself and those around you.  The Caregiver Martyr Syndrome sounds like this:  “I’m the ONLY one Mom trusts to take care of her so please don’t even think about stepping in.  I’m fine and can handle it”.  Sorry to say, but no one can be another’s ‘one and only’, especially for someone who needs 24/7 care.  Caregiver Marty syndrome is real and will be the quickest spiral downward to anger, resentment, depression, and goodness knows what else.
  •  Although family dynamics can get very sticky, especially when caring for older adults with chronic illness such as dementia, try your very best to keep the lines of communication open.  We have so many ways to keep families in the know without making individual phone calls every time something comes up, use today’s technology (group texts, emails or even private FB groups) to keep others informed.
  • Learn to ask for help – graciously.   First, you must know what kind of help you would like, and then you need to practice asking for that help in a friendly and kind manner.  Accept that you cannot do it all, and allow others the blessings of helping, which by the way, is very healthy for both the giver and receiver!
  •  By all means, get organized with legal and financial matters that must be tended to.  Believe it or not, when you take care of these things it will lessen your emotional burdens.  Check it off the list and you can move on to meeting other needs of your loved ones.
  • Practice living in the moment and cherish the time you have with your loved one.  Believe it or not, we have the choice as to how we want to spend this time with our loved one.  I would not have traded my time as a caregiver for my parents for anything.  Although the journey was very difficult, it was filled with so many blessings, life lessons, and sweet memories that are the real gems of what we get out of this life.Pam Brandon is President/Founder of AGE-u-cate Training Institute® and a passionate advocate for older adults and those who serve them.  She is a champion for caregivers around the world, and the creator of internationally recognized Dementia Live® sensitivity and awareness training experience.  
    http://www.AGEucate.com

 

 

Understanding Frontotemporal Dementia (FTD) Differences from AD


Although Frontotemporal Dementia (FTD) is largely misunderstood, it is the most common form of dementia for people under age 60.

Originally known as Pick’s Disease and often referred to as such, FTD describes a clinical syndrome and a group of brain disorders associated with shrinking of the frontal and temporal anterior lobes of the brain.  Frontotemporal Dementia differs from Alzheimer’s Disease in two distinct categories:  1) drastic changes in behavior, which will be described below and 2) problem with language 3) genetic component and 4) age at onset.

Behaviors associated with FTD can be either impulsive or bored and listless, and often is associated with inappropriate social behavior.  Some of these may include lack of social filtering or tact; decreased empathy toward others; increased interest in sex;  unexplained agitation;  neglect for personal hygiene; compulsive and often bizarre behavior or sudden changes in food preferences.

Problems with language may include difficulty in forming words and sentences and understanding other’s speech.  Important to note is that spatial skills and memory remain intact, which is a major differentiator from Alzheimer’s disease.

Familial FTD occurs when multiple people in a family across back-to-back generations have FTD or a related condition. The multiple people are usually closely related to each other, like a grandparent, parent and adult child, and they all belong to one side of the family or the other, not both.  This is known as genetic FTD.  About 10% – 20% of all cases of FTD is considered genetic FTD.

FTD typically strikes at a younger age.  The majority of FTD cases occur between the ages of 45 and 64.  In contrast, the average age of diagnosis of Alzheimer’s Disease (AD) is 80.  The impact on work, family, and financial burdens are significantly greater with FTD than AD.

FTD is frequently misdiagnosed as AD, depression, Parkinson’s Disease or a psychiatric condition, making it far less known and understood by the medical community.  As of 2011, there were approximately 60,000 cases of FTD in the US, so it is far less common than AD.  It currently takes 3.6 years to obtain an accurate diagnosis of FTD due to the complexity of symptoms.

Caring for someone with FTD is extremely challenging.  Care partners must be diligent in finding health care professionals who will help in diagnosis, coordinating care.  Like AD caregivers, understanding the disease is paramount.  Learning patient advocacy will offer a tremendous benefit to both care partners in dealing with the day to day changes that often occur and working with the professional care team on medication management and care provisions.

Because it is difficult to diagnose, care partners should be prepared for multiple specialist visits.  Keeping a detailed journal of behaviors will aid in helping doctors look at all the symptoms that the person is exhibiting, not just what they observe in an office visit.

Keeping a healthcare notebook will be a tremendous asset in helping manage doctor visits, medications, and recording patterns of behavior.

Care partners should seek a support group early on, as FTD, like AD, is especially stressful on care partners.  The Association for Frontotemporal Degeneration(AFTD) is an excellent resource of information, publications, a listing of local support groups and more.  Their number is 866-507-7222 or http://www.theaftd.org.

Care partners need to be educated early on in understanding care services, such as In-home care, adult day and residential care.  Finding the right care for each stage of the disease will help families plan for next steps.

Today, there is no cure for FTD and there are no current treatments to slow or stop the progression, but a growing number of interventions – not limited to medications – can help manage FTD symptoms.  It is imperative that FTD be diagnosed and treated by a healthcare professional who has clinical practice with Frontotemporal Dementia.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the internationally acclaimed Dementia Live® Simulation and Awareness training program.

 

Caring for Someone with Lewy Body Dementia (LBD)

Accounting for up to 20 percent of all forms of dementia, Lewy Body Dementia affects approximately 1.4 million Americans.  Lewy Body Dementia (LBD) is the second most common cause of progressive dementia behind Alzheimer’s disease.  LBD is also the most misdiagnosed form of dementia because symptoms are closely related to Parkinson’s disease and dementia with Lewy Body (referred to as DLB).

According to the Lewy Body Dementia Association, LBD is a progressive brain disorder in which Lewy bodies ( abnormal deposits of a protein called alpha-synuclein) build up in areas of the brain that regulate behavior, cognition, and movement.

LBD is a complex disease that presents a wide range of symptoms such as autonomic body functions, such as blood pressure control, temperature regulation, and bladder and/or bowel function.  LBD is progressively debilitating.

Like Alzheimer’s disease, LBD impairs thinking, such as memory, executive functioning (planning and processing information), or the ability to understand visual information.  In addition, patients with LBD may fluctuations in attention or alertness, and Parkinson’s-like symptoms such as movement disorders including tremors, stiffness, slowness and difficulty walking, hallucinations and alternations in sleep and behavior.

LBD is a complex disease and challenging for the persons living with as well as their caregiver.   Here are some tips and resources for care partners:

  1.  A person with LBD may need assistance with tasks like dressing and bathing.  This may cause frustration and anger, so caregivers need to understand that these processes may be much slower as the disease progresses.
  2. As cognitive functioning declines, a person may become anxious, frustrated and embarrassed.  Care partners should provide encouragement and certainly be able to assist with physical needs as the disease progresses.
  3. Support groups are often lifesavers for care partners.  Being a community of people with whom you share the same challenges can help emotionally, physically and spiritually.
  4. Seek out education and resources.  The Lewy Body Dementia Association (LBDA) is a national nonprofit health organization dedicated to raising awareness of Lewy body dementia, supporting people with LBD, their families and caregivers, and promoting scientific advances.  Through outreach, education and research, LBDA supports all those affected by Lewy body dementia.  http://www.lbda.org
  5. Keep a journal of your care partners physical and emotional changes that you bring with you to each doctor’s appointment.   This will help you work together with your healthcare professionals in managing medications,  understanding what to expect as the disease progresses.  This is critically important in our complex healthcare system.  Learning to be an advocate for your loved one makes you a strong partner in the healthcare team.

There is currently no cure for LBD.  Because it is such a complex disease, caregivers often ride a rollercoaster of emotions.  It’s critically important that caregivers take care of themselves as they care for the needs of their loved ones.  Learning to ask for help, staying connected to others for support and balancing your needs should be top priority.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the internationally acclaimed Dementia Live® Simulation and Awareness program, helping caregivers worldwide better understand those who are living with cognitive impairment.  

http://www.AGEucate.com