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The World Shrinks for Those with Alzheimer’s & Dementia

Alzheimer’s Dementia and dementia in general are a series of continuing losses. When individuals suffering from dementia reach the point of no longer being able to be continent, speak meaningfully, and need assistance with all aspects of activities of daily living, they may be ready for hospice care. At this point, dementia is quite advanced and brain tissue loss is advancing. Specifically, the individual has lost the ability to speak more than a half dozen different words, is incontinent most of the time, and often cannot ambulate without some type of assistance. There are other issues as well.

Many individuals will be highly distractible during meals, cannot tolerate stimuli such as noise, feel fearful of caregivers trying to give personal care, fearful of leaving a familiar facility, and may have increasing agitation. Further, loss of recognition of loved ones is common as the disease progresses. However, other modes of communication are often effective such as massage, music, aromatherapy, or just calm presence.

Background concept wordcloud illustration of Alzheimer’s disease

What does this mean for the family and the individual’s caregivers?

Those who are fearful are the most likely to refuse baths and showers, or personal care even if they are soiled or wet. If the caregiver rushes to complete the care, agitation and aggression are likely to be a problem. The individual needs to be approached calmly, and assured they are safe. The going may be slow and only partial completion of a task may take place. For example, if the individual is taken for a shower, is the area pleasant and conducive to lowering anxiety? If not, try adding soothing music, seat the patient and begin a partial bath sitting on a chair or toilet. Then move to the more intimate areas. This may decrease the fearfulness. Always assure that the individual is safe with the caregiver.

As more and more of the brain is destroyed, the individual may have problems with recognizing and using utensils to eat. They may have problems with food pocketing, chewing, and swallowing. The dining room experience may be too stimulating. Activities that are over stimulating may be a problem for the individual who can no longer process this information. Care modifications here include using finger foods, softer foods, a quiet dining area, one-to-one feeding, and allowing adequate time for the eating experience. Thickener may be added to fluids if the individual is prone to choking on thin liquids.

Avoid the phrase “do you remember….”

The process of the disease is loss of more and more brain tissue. This affects time awake; movement, ability to sit up, and ability to speak and remember. Family and caregivers need to introduce themselves with each encounter. Avoid the phrase “do you remember….” At this point, meals may be missed due to inability to arouse the individual. More and more time may be spent in bed and now attention to skin is important. Seating adaptations may need to be put in place to support trunk and head. Music is often a way to reach those at this stage as well as aromatherapy. Keeping the environment calm and not over-stimulating enhances comfort. Individuals will eat less and less and finally stop eating as the brain is extensively damaged by the disease process.

How Hospice Helps the Dementia Patient

End-of-life care is aimed at these losses. The hospice team helps family and patients to adapt and understand these changes as the natural disease progresses. Feeding tubes are not recommended as patients will often develop aspiration pneumonias and may not be able to handle the formulas for tube feeding. The process of placing a tube can be overwhelming to a patient who cannot process the experience. Avoidance of hospitalization is important as the patient with dementia’s world grows smaller and smaller. Hospital visits remove the patient from familiar surrounds, noises, and caregivers and can be quite frightening to the individual who then may become aggressive or agitated. This increases suffering for the patient and family as well as bringing more harm than good. Good end-of-life care is aimed at meeting the patient where he/she is in the dementia process and adapting to that place and walking with patient and family for the journey to the end of life. Key to good end-of-life care is education of the disease process and translating that to care interventions for the individual to maintain a good quality of life until time of death.

Caring for a loved one with Alzheimer’s or Dementia? Join our Alzheimer’s Educational Series every last Tuesday of the month. Register and learn more by clicking here.

Find local activities and information from the Alzheimer’s Association Dayton Chapter by clicking here.

nancytrimble

About the Author:

Nancy Sterling Trimble, PhD, RN, CNP, has served eight years at Ohio’s Hospice of Dayton as a Clinical Team Liaison and the focused care specialist for geriatrics and neurology with over 30 years of experience. She has served as a faculty member of Indiana Wesleyan University, Capitol University and Wright State University. Nancy has also contributed numerous articles to clinical publications.

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Ways to Celebrate the Life of a Loved One this Holiday Season

Remembering loved ones through photographs.The holiday season can be challenging to those who are grieving the loss of someone close.   Holiday rituals and traditions are important symbols of security and family bonds. Because of this, holidays can be both a reminder of the loss of a loved one, as well as a reminder of special, pleasant memories shared with that person.

For those who are grieving, painful feelings during the holidays are normal. Rather than place unrealistic expectations on themselves to do things the way they always have, grievers should lower expectations for themselves. While it may feel insincere if you try to force feelings of happiness and joy, do allow yourself to have fun. Loss teaches us more than anything about the preciousness of life and not to take it for granted.

We can also allow the holidays to be opportunities for memory, legacy, honor, connection, and healing. Expressing feelings and revisiting memories can be part of the healing process. Some suggestions for honoring lost loved ones might include:

  • Draw pictures or make cards of favorite holiday memories with the deceased.
  • Create a special ornament to hang on the tree or doorway.
  • Write a holiday letter to the deceased and place it in a special place either wrapped as a present under the tree or tied with a bow and placed next to their picture.
  • Place a picture of the deceased at the dinner table with a candle so they are part of the holiday feast.
  • Cook a favorite dish or dessert the deceased especially enjoyed.
  • Honor your loved one by making a toast, creating a memory area in your home, or hanging a holiday stocking filled with notes of special memories.
  • Look at photo albums and share memories.
  • Donate to a special charity in your loved one’s name.
  • Create a “gratitude bowl.” Family members can write holiday memories for which they will always be thankful about their loved one on colorful slips of paper. Share them out loud during a special time during the holidays.

These activities are powerful and healing because they allow mourning while at the same time giving permission to enjoy the holidays.

If you or someone you know could benefit from grief counseling from our professionals, please contact our bereavement center Pathways of Hope at 937.258.4991.

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10 Caregiver Support Tips

Caring for a loved one is rewarding and exhausting.  It is important that caregivers also take care of themselves.

The Caregiver Action NetworkHands that care offers these important tips for caregivers:

  • Seek support from other caregivers.  You are not alone!
  • Take care of your own health so that you can be strong enough to take care of your loved one.
  • Accept offers of help and suggest specific things people can do to help you.
  • Learn how to communicate effectively with doctors.
  • Caregiving is hard work so take respite breaks often.
  • Watch out for signs of depression and don’t delay in getting professional help when you need it.Taking care and resting
  • Be open to new technologies that can help you care for your loved one.
  • Organize medical information so it’s up to date and easy to find.
  • Make sure legal documents are in order.
  • Give yourself credit for doing the best you can in one of the toughest jobs there is!

Learn how we support caregivers by clicking here.

How to Help Someone Who is Grieving During the Holidays

The holiday season with traditions, celebrations and gatherings with family and friends is a landscape of painful landmines for those struggling with the death of a loved one. Supporting someone who is grieving during the holidays can be the most important gift you give this holiday season. The National Hospice and Palliative Care Organization offers ten suggestions for how you can really support someone who is experiencing grief.

1. Support their choice in how to handle the holidays. Some wish to follow traditions; others choose to avoid customs of the past and do something new. Let them know that whatever they choose is “right” for them.

2. Help with decorating or holiday baking, which can be overwhelming for someone who is grieving.

3. Help with holiday shopping. Share catalogs or online shopping sites that may be helpful.

4. Invite them  to join you and your family during the holidays as your guest for a religious service or a holiday meal.

5. Invite them to volunteer with you during the holidays. Doing something for someone else, such as helping at a food pantry or other charity, may help someone who is grieving feel better about the holidays.

6. Donate a gift or money in memory of the person’s loved one. Remind the person that his or her loved one is not forgotten.

7. Don’t expect someone to be “over it, ” and ready to move on.  What’s most important is to give the person hope that, eventually, he or she will enjoy the holidays again.

8. Be a good listener. Active listening is important to helping someone cope with grief and loss.

9. Remind them you are thinking of them and the loved one who died. Visits, cards and phone calls speak volumes about how much you care.

10. Remember them after the holidays. Sometimes the post-holiday period can prove to be even more difficult. Checking in after the holidays to see how the person is doing is also important.

If you or someone you know seeks grief counseling from our professionals, please contact our bereavement center Pathways of Hope at 937.258.4991.