Identify early, middle, and late stage symptoms and characteristics of dementia

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1 Ann Jirmasek, MA Clinical Gerontology Specialist Center for Alzheimer s Disease and Related Disorders SIU Neurosciences Institute (NSI) SIU School of Medicine Springfield, IL Identify early, middle, and late stage symptoms and characteristics of dementia Identify strategies for effective communication for families dealing with dementia throughout the stages of the disease Tailoring care to the abilities and changing needs of both persons effected with the disease and family caregivers 1

2 Dementia is not a disease itself but a group of symptoms that may accompany certain diseases or conditions. Dementing Illnesses (neurodegenerative disorders or dementia) Group of illnesses that destroy brain cells and lead a progressive loss of memory and other cognitive abilities. Memory, language, thought processes, behavior, mood Although some changes in memory may occur with normal aging, the symptoms of dementia include the loss of intellectual / cognitive functions of such severity to interfere with a person s daily functioning. 2

3 Alzheimer s Disease (most widely known) Lewy Body Dementia Frontotemporal Dementia Vascular Dementia Huntington Disease Crevtzfeldt-Jakob Disease (there are over 59 known types of dementia) Progressive, degenerative brain disease with gradual onset due to death of nerve cells in brain Disease progresses over 2-20 years and varies considerably from person to person 3

4 Alzheimer s disease typically progresses slowly in three general stages : MILD (early stage) MODERATE (middle stage) SEVERE (late stage) The disease effects people in different ways and each person will experience symptoms or progress through the stages differently. The symptoms worsen over time, but the rate at which the disease progresses varies. Stages may overlap. (AD Assoc. ws) 4

5 Most people in this stage function independently and may still be working, driving, and engaging in social activities. Despite this, they are having memory problems, such as forgetting familiar words or where they put things away in the house. (AD Assoc. w.s.) Gradual memory loss Object naming / word finding difficulties Trouble with new learning (tasks, names) Trouble performing routine tasks Disorientation in time and space Losing or misplacing objects Increased trouble with planning or organizing Impairment of judgement 5

6 While some insight into the situation may be retained, confusion and forgetfulness increases They may have trouble with everyday tasks such as paying bills, handling medications, and getting lost while driving NORMAL Can t find keys Search for casual names or words Briefly forget conversation details Feel the cold or heat more Can t find a recipe Forget to record a check EARLY ALZHEIMER S DISEASE Routinely misplace items or place important items in odd places. Forget names of family members and common objects, or substitute words with inappropriate ones Frequently forget entire conversations Dress regardless of the weather, clothes not appropriate for the temperature Can t follow a recipe / directions Can no longer manage checkbook, balance figures, solve problems, or think abstractly 6

7 Cancel a date with friends Make an occasional wrong turn Feel occasionally sad Withdraw from usual interests and activities, more apathetic, sleep more than usual Get lost in familiar places, don t remember how to get there or how to get home Experience rapid mood swings, from tears to rage, for no discernable reason, or for a reason that would never have upset you in the past. Shorter Fuse. Increased apathy (Alz Assoc. ws) Learn as much as you can about the disease Evaluate safety issues / driving / bill paying / medicine compliance Get legal and financial affairs in order Don t take on the journey alone (support groups) 7

8 Be calm and supportive Focus on feelings / not facts Pay attention to tone of voice Allow enough time for responses Avoid use of negative statements and quizzing Offer assistance as needed Encourage the use of notebooks / calendars Get into a routine Everything has a place / everything in its place Don t challenge memory Don t blame Simplify tasks 8

9 Typically the longest stage and can last for several years. Harder to hide or compensate at this stage Others may start to notice a change Worsening mental function / increased confusion Moody or withdrawn, especially in socially or mentally challenging situations Confusion with orientation / time relations 9

10 Changes in appetite Food preparation / house cleaning / shopping Trouble controlling bladder and bowels in some individuals / knowing what to do in bathroom Changes in sleep patterns Personal grooming / resistance / confusion / following steps / decisions about attire Changes in personality / behavior (compulsiveness, repetitiveness, suspiciousness, delusions, paranoia) Social isolation Possibility of hallucinations, delusions, paranoia Behavior concerns / trouble controlling impulses Increased risk of wandering / getting lost 10

11 Put yourself in their situation.. Look at body language to try to decipher what they are trying to express What happened just before the problem behavior started / was there a trigger? Are needs being met (hunger, thirst, pain) Changing environment (help or hindrance) How did you react to behavior (helpguide.org ws) Modify environment for potential stressors Noises, mirrors, shadowy lights, patterns Maintain calm Try to react to the emotions and not behaviors They will mimic your moods and anxieties Is it bothering you or them? 11

12 DON T: Argue Correct Confront Reason Remind them they forgot Take it personally Assume they are faking it 12

13 ~ Validate Validate Validate by doing so you give back some control ~ Don t be afraid to lie theoretical fibbing or therapeutic white lie ~Go with the flow you do not always have to be in control ~Distract ~Accept blame when you can even though it is not your fault (AD Assoc ws) Control of finances, medications (POA) Evaluate driving if necessary In-home care / meals on wheels Adult daycare Assisted living facilities Overall assistance with dressing, bathing, meal preparation, and other tasks RESPITE 13

14 Severe cognitive decline Most verbal ability is lost / difficulty communicating Loss of purposeful activity Extensive help with daily activites Trouble with ambulation / immobile / falls Loss of control over bladder and bowels Trouble swallowing Trouble communicating pain Vulnerability to infections 14

15 Require full-time, around the clock care Require total assistance with ADLS In-home care / Nursing home care Late stage medical decisions Hospice care 15

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