Tag: Alzheimer’s

Understanding Dementia, the Ultimate Thief

Posted on by genushealth Posted in for givers of care, UnderstandingTagged , , , , ,

Understanding dementia and all its complexities cannot be done in one article, or neither by reading an entire book.  Hence is why there are countless people who have dedicated their careers to helping us better understand this debilitating condition.  There are many books out there, and one of the best, and most easy to read books I have found is called “Experiencing Dementia”  by H. Norman Wright.  It is a short, easy to read book and very reasonably priced on Amazon (less than $5.00)

The author has been diagnosed with early stages of dementia after years of being a caregiver for a handicapped son and eventually, his own wife.  After doing his own research, both academically and experientially, he skillfully describes the condition in an easy to understand manner.

Dementia is not a disease in itself; but rather a group of symptoms that result from other sources, or diseases.  It is basically an ‘umbrella term’ used to describe the many symptoms that interfere with normal life functioning.  There are several types of dementia, with Alzheimer’s accounting for somewhere between 60-80% of all cases (over 5 million cases).  The other most common types of dementia are:

  • Vascular Dementia
    • small silent strokes
  • Dementia with Lewy Bodies
    • Abnormal clumps of protein form in the brain causing never cells to degenerate
  • Frontotemporal Dementia
    • The area of the brain responsible for behavior is gradually eroded
  • Normal Pressure Hydrocephalus
    • Used to be called ‘Water on the Brain’ because of buildup of fluid on the brain
  • Mild Cognitive Impairment (MCI)
    • Change of IQ functioning

What our loved ones with dementia are facing:

  • Memories and abilities that they have worked their entire life to obtain, are being slowly stolen from them
  • Great emotional pain: for both Receivers of Care and Givers of Care
  • Loss of self: one of the greatest losses a person can face
  • Emotional issues and personality changes as a result of the part of the brain responsible for emotions and memory is affected (the amygdala)
  • Sleeplessness due to the brain stem being affected
  • Loss of memory is extremely frightening; our memories give us life!

Dementia is a terrible thief.  It robs people of their memories, abilities, personalities, coping abilities, sleep, and eventually physical functions.  How couldn’t this change a person?  It is so out of their control, we must remember that.  It helps me to put myself in the place of a dementia patient, and try to imagine how I would feel.  Yes, this is a scary exercise.  But if it’s scary just thinking about it, imagine how it is to live with it!  Bone chilling to consider.

One fact is certain.  Regular, consistent, positive visits from family and friends is the biggest source of relief for our loved ones, even if they don’t remember it later.  Imagine how frightened they must feel.  Spreading out visits will help with that.   Using the Community module in the Genus™ app, you can look back over past data and see how you and your care circle are doing with providing consistent contact with your loved one.  You can correlate that to other date  you might be tracking, such as physical mobility and/or mood.  Then using the calendar function, you can easily plan visits so that they don’t overlap too much and are spread out to best benefit the patient.

Using the Moments module, you can take pictures of special people, places and events that will help stimulate positive conversation during your visits.  Using your smart phone during a visit, you can share the photos with your loved one, or just listen to some music.  We have also taken pictures of bible verses images and other inspirational sayings that we use when visiting my mom.  She is always grateful for the wisdom shared and seeing it in writing is different than hearing it from a family member.  More authoritative and less “bossy”.

Yes, dementia is a thief.  But armed with information and tools, we can minimize the damage and provide the best love and support we can for our loved ones.

Communicating With Our Receivers of Care

Posted on by genushealth Posted in for givers of careTagged , , , , , ,

 

If you are involved in caring for an older adult, maybe suffering from Dementia or Alzheimer’s,  or possibly suffering from a physical disability; you already know how difficult communicating with them can sometimes be.   It is understandable that our Receivers of Care can perceive us as ‘bossy’.  It is also understandable that we won’t like that perception one bit!

We didn’t choose to have to tell our loved ones what to do and how to do it.  They certainly did not choose to need care.   It is easy to get frustrated in the whole communication process, ending up in an unnecessary argument.  At the very best, we may meet with passive resistance from our loved ones and that doesn’t help anyone.  At the very worst, an all out war!

This article from Psychology Today provides some excellent tips for communicating with the loved ones we care for.  If you or your loved one are particularly struggling with communication, there is also a book that goes in to greater detail offered in the article.

Am I At Risk for This Disease?

Posted on by genushealth Posted in UnderstandingTagged , , , ,

If your life is wrapped up in the challenges of caring for a loved one with Alzheimer’s, you can’t help but think, “Is this going to be me one day?   Am I at risk for this disease?”   It can be pretty darn scary.

Diet

What we eat is critical to maintain healthy brains, and of course to keep us feeling strong enough to accomplish all that we need to do.  Amy Paturel, of AARP discusses the importance of the diet we follow for our brain health.    You can find her article on the AARP website.  She lists simple foods that need to be part of our daily diet to optimize the science of nutrition in combating Alzheimer’s.   Basically, she is encouraging the Mediterranean Diet, known for brain enriching foods.

 Regular Exercise

Of course, diet is just part of what we need to do to keep our brains healthy.  Regular exercise is equally important, which can be difficult when you are busy living your demanding life while caring for an aging loved one.   Remember to allow time for yourself to get the exercise you need no matter how impossible that seems to be.  Is there a way you can kill two birds with one stone and exercise while spending time with your loved one?  My dad loved his daily walks and to make it more physically challenging for myself, I sometimes would jog in place as we walked through the park.  He got his much needed family time and I was able to get some cardio as we spent time together as well!   I have a friend who gently jogged as she wheeled her mom through the neighborhood in her wheelchair.  Heck, I’ve even been known to sit and do my stretches as we chatted in the den.   We do what we gotta do, right?

Additional Information

For more tips on Alzheimer’s prevention, see Alzheimer’s website with all kinds of up to date research:  alz.org

Remember, taking care of the You the Caregiver is just as important as taking care of your loved ones!

When Your Loved One Can’t Communicate Clearly

Posted on by genushealth Posted in Bringing in outside helpTagged , , , , ,

Givers-of-careOne of the most difficult situations to deal with when caring for a loved one with a brain disease such as dementia, is when the patient cannot clearly communicate his/her wants and needs.  Even when we have provided the necessary home-care or nursing care for their safety, we worry how their emotional safety and if their needs are being met.   How can our loved ones communicate needs, interests and desires when they can’t clearly communicate?

The Alzheimer’s Association has some good resources for communicating with Alzheimer’s patients as they progress.  You will want to spend a great deal of time reading from the resources here.

This is Me!

One idea is to create a “This is Me” document for caregivers to have access to when they care for your loved one; either at home or in a facility.  Ideas to include in the document (worded as you speaking for the patient).

  • Name I like to be called.
  • Where I live: The area (not the address) where you live and how long you have lived there.
  • The person(s) who knows me best: This may be a spouse, relative, friend or care-worker.
  • I would like you to know: Include anything you feel is important and will help staff to get to know and care for you, eg I have dementia, I have never been in hospital before, I prefer female caregivers, I am left-handed, I am allergic to…, other languages I can speak.
  • My background, family and friends (home, pets and any treasured possessions): Include place of birth, education, marital status, children, grandchildren, friends and pets. Add religious or cultural considerations.
  • Current and past interests, jobs and places I have lived and visited: Include career history, voluntary experience, clubs and memberships, hobbies, sports or cultural interests, favorite or significant places.
  • The following routines are important to me: What time do you usually get up/go to bed? Do you have a regular nap or enjoy a snack or walk at a particular time in the day? Do you have a hot drink before bed, carry out personal care activities in a particular order or like to watch the evening news?
  • What time do you prefer to have breakfast, lunch, evening meal?
  • Things that may worry or upset me: Include anything you may find troubling, eg family concerns, being apart from a loved one, or physical needs such as being in pain, constipated, thirsty or hungry. List environmental factors that may also make you feel anxious, eg open doors, loud voices or the dark.
  • What makes me feel better if I am anxious or upset: Include things that may help if you become unhappy or distressed, eg comforting words, music or TV. Do you like company and someone sitting and talking with you or do you prefer quiet time alone?
  • My hearing and eyesight: Can you hear well or do you need a hearing aid?
  • How is it best to approach you? Is the use of touch appropriate?
  • Do you wear glasses or need any other vision aids?
  • How we can communicate: How do you usually communicate, eg verbally, using gestures, pointing or a mixture of both? Is the use of touch appropriate?
  • Can you read and write and does writing things down help?
  • How do you indicate pain, discomfort, thirst or hunger? Include anything that may help staff identify your needs.
  • Are you fully mobile or do you need help? Do you need a walking aid? Is your mobility affected by surfaces? Can you use stairs? Can you stand unaided from a sitting position? Do you need handrails? Do you need a special chair or cushion, or do your feet need raising to make you comfortable?
  • What physical activity do you prefer?
  • My sleep: Include usual sleep patterns and bedtime routine. Do you like a light left on or do you find it difficult to find the toilet at night? Do you have a favored position in bed, special mattress or pillow?
  • My personal care: List your usual practices, preferences and level of assistance required in the bath, shower or other. Do you prefer a male or female caregiver? Do you have preferences for brands of soaps, cosmetics, toiletries, continence aids, shaving or teeth cleaning products and dentures? Do you have particular care or styling requirements for your hair?
  • How I take my medication: Do you need help to take medication? Do you prefer to take liquid medication?
  • My eating and drinking: Do you prefer tea or coffee? Do you need help to eat or drink? Can you use cutlery or do you prefer finger foods? Do you need adapted aids such as cutlery or crockery to eat and drink? Does food need to be cut into pieces? Do you wear dentures to eat or do you have swallowing difficulties? What texture of food is required to help – soft or liquid? Do you require thickened fluids? List any special dietary requirements or preferences including being vegetarian, and religious or cultural needs. Include information about your appetite and whether you need help to choose food from a menu.
  • Other notes about me: Include additional details about you that are not listed above and help to show who you are, eg favorite TV programs or places, favorite meals or food you dislike, significant events in your past, expectations and aspirations you have.

 

You May Not Remember, But I Will Never Forget

Posted on by genushealth Posted in For the receiver of careTagged , , , , , ,

Givers-of-careSay the title of this article out loud to yourself.   Let that sink in for a moment.  Can you picture yourself silently saying this to your aging parent who struggles to remember the past?  Now picture yourself saying it with a smile in your heart.  You are building new memories that you will have for a lifetime.  Make them count using the power of photos.

This is something I tried to remind myself of often when spending time with my dad during the final stages of his Alzheimer’s and I find myself doing the same as I enjoy time today with my mom.   That cruel disease of Dementia, stealing the memories of our loved ones, can be discouraging.  But if you try to remember that you are building new memories, while leaning on the old memories, you will one day look back and be glad you thought of it this way.  I know I am.

Using the Power of Photos to Build New Memories

One possible way to create new fun memories with your loved one who suffers from memory loss is to use photos to stimulate conversations about the past.   Photographs from the past allow patients to reminisce about pleasant times in their lives. Photographs from the present help patients relate to their current situation. The patient experiencing memory loss is able to “remember or recognize someone they love and know in a world where so many things are now unfamiliar to them.”2 A study by Ellen Mahoney of Boston College found that, in one instance, photos distracted the Alzheimer’s patient from the effects of Alzheimer’s disease.

 

Using the “Moments” platform of the Genus™ App, you and all the other members of your caring community can use a consistent set of photos to work with your aging loved one.  From the app, you can upload the photos you take to a digital photo frame for your loved one to enjoy.  My mother comments almost daily on how much she loves the photos we send to her via our phones to her photo frame.  It makes her feel part of her children’s and grandchildren’s lives to see the photos they send from their various adventures.   Of course she adores the photos we take when we’re with her as well, but she really benefits from seeing “surprise” photos pop up on her frame from her loved ones’ comings and goings.

 

10 Photo Tips for Families Facing Alzheimer’s

Compiled by the Alzheimer’s Association® in partnership with Shutterfly, here are 10 ways you can help lift a person with dementia to reminisce:

  1. Place photos in chronological order.Photo books can be great tools for showing someone’s life history or story. Start your photo book at the beginning of the person’s life and lead up to the present day. Organize the book around key moments and concentrate on happy occasions to assist with engagement. Also, keep the design simple, with one or two pictures per page, so the photos are easy to focus on.
  2. Show relationships. To help spark recognition of family members, dedicate a section to each person. Choose photos that include the person with the family member from different life stages and place them in chronological order.
  3. Select meaningful moments. Be sure to include photos that reflect the person’s meaningful life moments and depict his/her favorite hobbies or activities, such as weddings, graduations and vacations.
  4. Make it an activity.Work with the individual as appropriate to create the book, and share memories and conversation as you put it together.
  5. Engage in conversation.Ask open-ended questions about the people or events in the photo. How were you feeling in that picture? Tell me about your brother. What are some of your favorite childhood stories? Tell me more about this picture. The answers are less important than the conversation and engagement.
  6. Share your own memories.As part of the conversation, share your memories and feelings when looking at the pictures. Answer some of the same questions you’re asking the person with Alzheimer’s.
  7. Connect, don’t correct.This is more about making a connection and sharing memories. Focus on connecting with the person, not correcting them.
  8. Revisit frequently. Take the time to frequently revisit memories using the photos. Do what works best for the individual. It may be daily or weekly, depending on the person.
  9. Mix it up.Don’t discuss the same set of photos week after week. To help keep it fresh and interesting, discuss various parts of the book with different people and events on a regular basis.
  10. Move at a comfortable pace.Follow cues from the individual to gage their interest level and determine how they are reacting to the photos.

 

 

It’s important to monitor your loved one’s reactions to the activity.   If the reaction is joyful or reminiscent, you are on the right track.  There may be times that the photos may somehow agitate him/her, then obviously you will want to redirect.  Like anything we do when dealing with dementia, what works one day, may not necessarily work the next.  One of our many challenges that keeps us on our toes!

Help for Alzheimer’s Givers of Care

Posted on by genushealth Posted in UnderstandingTagged , , ,

It’s late at night, you feel like you need some support, you don’t feel like calling the 24/7 Alzheimer’s hotline, but you need some sort of boost in the arm as you try to figure out the best way to care for your loved one with memory issues.  this Facebook page to find help with lots of real time tips for people caring for someone with Dementia.

What’s nice about this is that you can post a question or challenge, and receive answers from those who are in the trenches, just like you: Everyday people, using technology to get through this challenge, together.

At genusConnect, we want to provide you with the best up to date resources to help you in this time of need. If you find other helpful websites such as the one above, please contact us and let us know so we can share it with others. We can care better, together.