Caring for a Patient or Family Member with Alzheimer s Disease or Related Dementia

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Caring for a Patient or Family Member with Alzheimer s Disease or Related Dementia Tiffany D. Long, MS4 UNC School of Medicine MD Candidate Class of 2018

Disclaimers A portion of this project is/was supported by funds from the Bureau of Health Professions (BHPr), Health Resources and Services Administration (HRSA), Department of Health and Human Services (DHHS) under grant number #U1QHP28734, Carolina Geriatric Workforce Enhancement Program. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by the BHPr, HRSA, DHHS or the U.S. Government. The content in this presentation is not intended nor recommended as a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your own physician or other qualified health care professional regarding any medical questions or conditions.

Content Dementia definition Types of dementia Treatment Behavioral changes and management Harmful medications Respite and caregiver support Resources

Dementia Defined Decline in mental ability Memory loss Language problems Trouble making decisions Interferes with daily activities. Symptoms come on slowly and get worse over time. Alzheimer's & Dementia 2016; 12(4).

http://www.alz.org/national/documents/tenwarnsigns.pdf

Four Truths of Dementia 1. At least two parts of the brain are dying -One related to memory plus others 2. It is chronic and cannot be cured 3. It is progressive and will get worse 4. It is terminal Positive Approach LLC, 2012

The Many Causes of Dementia Photo credit: www.dementia-by-day.com

Four Common Types of Dementia Alzheimer s Disease Vascular Dementia Lewy Body Dementia Frontotemporal Dementia

Alzheimer s Disease Most common type of dementia Accounts for 60-80% of all dementia Caused by amyloid plaques and tau tangles Alzheimer's & Dementia 2016; 12(4).

The Brain in Alzheimer s Disease Normal Alzheimer s Rubin E, Reisner H. Essentials of Rubin's Pathology 6th Ed. Philiadelphia, PA; 2014:772

Symptoms of Alzheimer s Disease Cognitive Symptoms Memory: New information Language Thinking Reasoning Behavioral Symptoms Early Stages Irritability Anxiety Depression Late Stages Sleep problems Hallucinations Agitation Alzheimer s Association. 2017. Behavioral Symptoms. Retrieved from www.alz.org

Vascular Dementia Accounts for 10% of dementia Caused by many strokes over time that block blood flow to parts of brain Stair-step decline in cognitive function Symptoms depend on where the strokes occur Alzheimer's & Dementia 2016; 12(4).

Step-Wise Decline in Vascular Dementia Symptoms stay the same for a while Suddenly get worse after each stroke

Lewy Body Dementia Accounts for 10-25% of all dementia cases Specific cause remains unknown Buildup of proteins in the different parts of the brain Can be similar to Parkinson s disease and Parkinson's dementia Lewy Body: Movement symptoms and dementia around the same time Parkinson s Disease: Movement symptoms first, dementia much later Alzheimer's & Dementia 2016; 12(4).

Symptoms of Lewy Body Dementia Confusion Trouble making decisions Seeing things that aren t really there Nightmares Memory loss Stiffness Poor balance Dizziness Falls Incontinence Alzheimer's & Dementia 2016; 12(4).

Frontotemporal Dementia Personality Loss of insight and emotional control Language Difficulty understanding others, trouble with words, reading difficulty Alzheimer's & Dementia 2016; 12(4).

Treatment of Dementia Behavioral management! Medications available for treatment of Alzheimer s Disease Weigh the risks and benefits of these medications with a physician Goal of future treatments: target changes in the brain, rather than only decreasing symptoms

Personality and Behavioral Changes Getting upset, worried, or angry more often Depression, anxiety, lack of interest Hiding things Paranoia Wandering Hitting Aggression Misunderstanding what he or she hears or sees

Consider Their Point-of-View It is important to understand that you will not be able to change the person suffering from Dementia. Find a way to adapt and interact with your loved one. They might feel: Sadness Fear Stress Confusion Anxiety

Non-Drug Treatment 1. Identify the behavior 2. Understand the cause 3. Change the environment to help the situation Alzheimer s Association. 2017. Non-drug Treatment Strategies. Retrieved from www.alz.org

Trigger of Behavioral Change Environmental Changes Caregiver change Change in living arrangements Travel Hospitalization Houseguests Bathing/Changing clothes Medical Causes Pain Infection Delirium Medications Constipation Urinary retention Alzheimer s Association. 2017. Helpful Hints to Prevent Agitation. Retrieved from www.alz.org

Alzheimer s Association. 2017. Helpful Hints to Prevent Agitation. Retrieved from www.alz.org Preventing Agitation Create a calm environment Reduce noise Remove stressors Change your expectations Limit caffeine Exercise Soothing rituals Gentle reminders Monitor Personal Comfort Check for pain, hunger, thirst Check for constipation, full bladder Check for skin irritation Be sensitive to their frustration

Alzheimer s Association. 2017. Helpful Hints During an Episode of Agitation. Retrieved from www.alz.org During an Episode of Agitation What to do Ask permission Approach slowly from the front Use calm, positive statements Validation Give options Distraction Say I m sorry Say I know it s hard What not to do Raise voice Take offense Corner, crowd, restrain Argue, reason, shame Force, explain, show alarm Make sudden movements out of person s view

Delirium: Symptoms and Risk Factors Advanced Age Dementia Dehydration Infection Medications Hospitalization Surgery Low blood sugar Key Symptoms Sudden onset of changes in thinking Unable to pay attention Confusion Treatment Treat the cause Keep familiar people with them in hospital Awake during day, sleep at night

How to Recognize Delirium https://www.youtube.com/watch?v=hwz9m2jzi_o

Beers Criteria List of potentially harmful medications for older adults developed by American Geriatrics Society Medications to be avoided in Dementia Anticholinergic drugs Benzodiazepines Hypnotics Antipsychotics J. Am Geriatric Soc. 2015;63:2227-46

Anticholinergic Medications: Can increase risk of falls, dementia, delirium 1 st generation antihistamines Bendaryl (diphenhydramine) Atarax, Vistaril (hydroxyzine) Antidepressants Tricyclics: amitriptyline, nortriptyline, imipramine paroxetine Urinary incontinence medications Oxybutynin Detrol, Vesicare Side effects include confusion, dry mouth, constipation, urinary retention, sedation, memory impairment J. Am Geriatric Soc. 2015;63:2227-46

Benzodiazepines Alprazolam, lorazepam, diazepam, clonazepam, temazepam, oxazepam Used to treat anxiety, insomnia, alcohol withdrawal Can cause drowsiness, memory problems If they have to be used, should be at the lowest dose that works Lorazepam Oxazepam Temazepam Remember LOT These are preferred as they are shorter acting and better metabolized by older adults J. Am Geriatric Soc. 2015;63:2227-46

Sleep medications and Antipsychotics Hypnotics Ambien (Zolpidem) most common Used for treatment of insomnia Side effects Headache, drowsiness, dizziness Increased risk for falls and delirium FDA alert regarding increased risk of morning impairment Antipsychotics Sometimes used to treat agitation in dementia and delirium Haloperidol, risperidone, olanzapine, quetiapine are common examples Black-Box Warning J. Am Geriatric Soc. 2015;63:2227-46

A Message to Caregivers https://www.youtube.com/watch?v=yd7uyctx7mg

Remember to Focus on what is Maintained How things or people used to be Emotional Memories Desire to be respected Desire to be in control Need for things to make sense from MY perspective Social chit-chat Music and rhythmical speech Expletives Non-verbal Facial expressions (until severe) Gestures Body language Music Art Dance Used with permission of Orange County Department of Aging

Caregivers Caring for a loved one with dementia can be overwhelming People with dementia living with highly stressed caregivers may have more behavioral problems and agitation Neurology July 1998 vol. 51 no. 1 Suppl 1 S53-S60

Respite Resources Family, Friends, Volunteers, Adult Day Services NC Department of Health and Human Services Website provides a listing of Adult Day Services by county. https://www.ncdhhs.gov/assistance/adult-services/adult-day-services NC Division of Aging and Adult Services https://www.ncdhhs.gov/divisions/daas Respite, project CARE 828-687-5609

Caregiver Support Resources Alzheimer s North Carolina, INC. www.alznc.org 919-832-3732 Transitions Guiding Lights- Caregiver Support Center guidinglightsnc.org 919-371-2062 North Carolina 211 dial 211 or 888-892-1162 NC211.org North Carolina Institute of Medicine Current policy and legislation www.nciom.org search for dementia Alzheimers.gov National Institute on Aging www.nia.nih.gov/alzheimers ADEAR- Alzheimer s Disease Education and Referral 1-800-438-4380

Any questions?