Things they don’t tell you about Alzheimer's Disease
Alzheimer's Disease is painful experience for patients and loved ones. We had lots of questions and wanted to try to shed some light on the hard to talk about subjects, so we turned to the experts. Here are their answers:
What are some of the most surprising things you have found out while treating an alzheimer’s patient?
"...That this disease is unforgiving. Alzheimer’s affects each person differently. No two people are alike. This disease does not only affect the patient but the family as well. The grief of loss comes long before the patient is gone physically from earth. The reversion back to young adults, teenager, and even toddler stages; how life history and repressed memories affect the present day person."
"..Violence can come with confusion"
"No Alzheimer’s patient is the same. Every day is different. A patient may not be able to make a simple sandwich but has the ability to fix a shower handle."
How can families of alzheimer's patients be helpful or harmful in the process?
"Families can be harmful with the process by waiting too long to seek treatment options and learning about community living options, caregiver services etc.. also having an ongoing conversation with their loved ones regarding what they want if and when they may develop the disease. Families need to educate themselves on the disease and the stages, being prepared can save a lot of grief and confusion later on.Families can be helpful by knowing routines, history of their loved ones. Being able to assist caregivers on what they did, what they like, and how they did things. Providing that information help caregivers individualize care needs and options to make and create a better quality of life."
"Alzheimer’s is a difficult disease and overwhelming to family and caregivers. Understanding that those living with Alzheimer's are not doing anything to you is important, as well as meeting the patient where they are. Do not argue with an Alzheimer’s patient, it is not beneficial to anyone."
Have you worked with patients who have other mental health challenges such as depression or emotional stress?
"Yes, several patients have multiple diagnosis that can make the treatment more challenging. Finding those individualized treatment plans that enhance their quality of life should be a focus for all caregivers. Combo diagnosis may be Alzheimer’s with OCD, ADHD, Major Depressive disorder, PTSD, or Autism."
"Yes, depression and anxiety are common findings in AD patients ... The memory issues often cause emotional stress/depression."
How does the cost of care affect the families of patients with Alzheimer's disease?
"Those that have prepared for retirement and planned accordingly leave their families in good places for treatment options. Cost for caring for Alzheimer’s patients are costly due to the amount of care needs that go along with this disease. Resources are limited on cost assistance with aging relatives."
"This is a very important issue that AD patients face. They often have a lot of financial costs: prescription medications, physical/occupational therapy, and home care. These costs can become a burden for the patients and families."
What has been the most difficult situation you’ve experienced with a patient when trying to take care of an Alzheimer patient’s incontinence?
"Dignity, Fear, and Denial are the main issues we face taking care of a patient with incontinence issues. Talking to your patient and getting them to know they can trust you helps with this process. Having them assist with their own care also aides in these efforts. Giving the patient choices and options, talking through the process, and guiding them as you assist help make this process easier."
"Reports of embarrassment and odor."
"Alzheimer’s patients may not have the ability to recognize their incontinence issues. A couple of reasons include not being able to react quickly enough to the sensation of needing to use the toilet as well as not being able to find, recognize, or use the toilet. Remember what is happening to Alzheimer’s patient is not a matter of choice. Treat your patient with compassion and respect."
How do you communicate to your patient that they need to wear an incontinence product?
"As gently as possible. If resistance is there, products that mimic regular underwear usually help."
"I communicate this as a non-judgmental, matter of fact and compassionate way. I would never want the patient to feel embarrassed."
"Depending on the patient the use of incontinence product can be quite difficult. It is a matter of dignity for many. Be patient and creative Sometimes just replacing underwear is accepted without a conversation. Sadly, there is no formula."
Are your patients getting the right incontinence products for their needs or are they going with what is convenient?
"Price is normally an issue with incontinence products; most families are going to go the cheapest route possible and the one that is more convenient. Offering options to families,and showing them products usually helps in the decision-making process. From a clinical, prospective we encourage families to look for products that protect the integrity of the skin."
"I find that my patients often look for products that are inexpensive as they often do not have a lot of expendable income."
Feedback provided by:
Shannoa S. Holt RN | CDAL / Executive Director Elmcroft of Maumelle,
Brandye Bisek MSN, APRN, FNP-BC,
Jennifer Spencer, RN