26: Late Stages: Behavior & Sleep

This program will:

• Discuss common behavior and sleep issues that develop in the late stages of Alzheimer’s disease
• Present some principles and strategies for addressing behavior and sleep problems

• There are no easy answer when its comes to the care of another
• Our hope is to offer you useful information and guidelines for caring for someone with dementia
• These guidelines will need to be adjusted to suit your own individual needs

• Wandering and pacing
• Rummaging
• Catastrophic reactions
• Verbal aggression
• Combativeness
• Agitation and aggression

Associated with brain changes

• False perceptions (perceptual distortions)
• Hallucinations
• Illusions
• Delusions
• Paranoia and suspiciousness
• Negativity
• Refusal of care
• Apathy

• Brain changes due to Alzheimer’s
• Normal changes of aging
• Medical conditions
• Environmental stress
• Task expectations
• Loss of impulse control
• Judgment impairment
• Motivational decline (apathy)
• Delusions, illusions & hallucinations
• Loss of functional abilities

• Executive function
• Impulse control
• Judgment
• Motivation
• Attention and concentration

• Apathy
• No facial expression
• Indifference
• Diminished initiative
• Poor persistence
• Flat emotional response
• Lack of insight
• No emotion
• Low social engagement
• Depression
• Sad face & posture
• Worry
• Low attention & concentration
• Appetite & sleep disturbance
• Suicidal thoughts or attempts
• A healthcare professional needs to evaluate the symptoms to determine the condition and the best approach for treatment
• Apathy and depression can occur together in the same person

• Robert shows some resistance when taken to the dining room for meals
• Doesn’t acknowledge others at the table
• Doesn’t ask to be taken to the bathroom when he needs to go
• Disinterested in the people around him
• Shows little or no emotion on his face
• If not directed to do so, he doesn’t eat, bathe, brush his teeth, or talk to anyone
• Indifferent to his surroundings and events

What can we do to help Robert?

• A. Encourage exercise.
• B. Engage in communication.
• C. Start him on medication.
• D. All of the above.

Choice A: Encourage exercise, is an excellent choice.

• Exercise improves respiration and circulation
• Increases delivery of oxygen and nutrients
• Exercise options in the late stages
• Chair exercises, ball toss
• Walking with assistance
• Music, dancing
• Increase activity over time
• Select exercises that are within the person’s abilities
• Consult a healthcare professional about health risks

Choice B: Engage in communication, is another good choice.

• Engage
• Spend quality time
• Sit together at mealtime
• Get in close
• Make eye contact and smile
• Show interest
• Speak clearly
• Use simple terms with the important words last
• Use body language to help convey the meaning
• Use gentle but firm direction in activities

Choice C: Start him on medication, is another good possibility. Choice D: all of the above, is the best answer. Robert will need close personal attention from an engaged caregiver who will use simple, direct communication to provide direction and encourage exercise.

• Caused by fear
• Often from delusions and hallucinations
• Caregivers should be calm and reassuring
• Use simple, clear communication

• HALLUCINATION: false perception
• VISUAL HALLUCINATION: seeing something that is not there
• AUDITORY HALLUCINATION: hearing something or someone that is not there
• ILLUSION: misperception or misinterpretation of a real object
• DELUSION: false idea or belief that is strongly held
• Primarily due to brain damage
• Functional losses can lower a person’s sense of mastery and self-worth, further leading to suspicion and fear of people

• Physical Illness
• Loss of self worth
• Unwarranted or exaggerated mistrust
• Caregivers should be careful so as not to give any reason to be suspicious
• Consider consulting a healthcare professional about medications that reduce their occurrence

Responding to Hallucinations, Illusions, and Delusions

• Do not be argumentative or dismissive

What would be a better way for a caregiver to respond?

• A. Investigate the surroundings.
• B. Check for fever or other signs of illness.
• C. Look for environmental causes.
• D. Offer reassurance.
• E. All of the above.

Choice A: Investigate the surroundings, is a very good response.

• Acknowledge and respect the person’s assertion and dignity
• Look around to reassure the person

Choice B: Check for fever or other signs of illness, is also a great answer.

• Physical illness, fever, medication, and severe constipation are common causes of delirium, which can cause impaired perceptions

Choice C: Look for environmental causes, is another great response.

• Cover mirrors and windows
• Provide adequate lighting
• Arrange room to prevent shadows
• Remove clutter and hazardous objects
• Eliminate sources of noise if possible
• Offer reassurance
• Stay with them
• Divert their attention
• Consult a healthcare professional

Choice D: Offer reassurance, is another great answer.

• Do not argue or try to correct the person
• Offer reassurance that everyone is safe and everything is okay
• Watch the person to make sure there is no danger of harm to self or others.

Choice E: All of the above, is the best answer.

• Diversion or redirecting is a useful strategy for managing false perceptions and beliefs
• Shift a person’s attention to a pleasant topic or activity
• Do not argue—instead, reassure the person
• Compliment and “build up” the person’s self-esteem
• These strategies can promote self worth and allow people to reminisce

• Sometimes hallucinations and delusions can be pleasant
• Not harmful
• Pleasant to those experiencing them
• Can be allowed and even used as topics of discussion

• Hallucinations, illusions, delusions, apathy, and negativity are often symptoms of late stage alzheimer’s disease
• Many factors contribute to these behavior changes
• Normal changes of aging, vision and hearing loss, medical conditions, and the environment
• Apathy is characterized by diminished initiative, poor persistence in activities, indifference, and lack of interest, emotions and insight
• Engage the person
• Use gentle but firm directions
• Encourage exercise
• Consider medications
• Hallucinations, illusions, and delusions are perceptual distortions
• Do not argue or dismiss the fear
• Investigate potential causes
• Provide reassurance
• Use redirection
• Modify the environment, lighting, noises
• Treat each person with dignity and respect

• Nighttime awakenings, wandering at night, illusions, hallucinations and nightmares
• Reversal of the usual daytime wakefulness/ nighttime sleepiness pattern
• Loss of deep, restful sleep

• Low level of wakefulness and alertness
• Near comatose condition

Nonpharmacological Sleep-Wake Cycle Interventions

• Increase daytime activities and physical exercise
• Increase exposure to daylight
• Use a light therapy box
• Let sunlight into the room or light up a room as much as possible during the day
• Nighttime darkness
• Quiet room

Nonpharmacological Sleep-Wake Cycle Interventions (cont’d)

• Sleep Hygiene
• Consistent schedule
• Nighttime rituals and routines
• Comfortable in bed
• Limit naps
• Use bed primarily for sleeping
• Minimize pain and fatigue
• Learn to read body language and look for signs of pain or fatigue
• Look for and attend to any discomfort
• Talk to a healthcare professional

Nonpharmacological Sleep-Wake Cycle Interventions (cont’d)

• Sleep Hygiene (cont’d)
  • Avoid excessive drinking in the evening
  • Restrict the use of alcohol
  • Prevent caffeine intake in the late afternoon and evening
  • Avoid tobacco
  • Avoid heavy or rich food late in the evening
  • Try a light snack before bedtime
  • Serve sleep-promoting foods for dinner or evening snack
    • Dairy products; soy products, beans and lentils; whole grains, rice and oats; some nuts and seeds; eggs, fish and poultry; and certain fruits and vegetables.

• Orient and reassure
• Remind them it is sleep time
• Offer a quiet activity
• Warm milk or calming herbal tea
• Sit with person

For more information about managing nighttime awakenings and other sleep issues, click here.

• Provide reassurance
• Use reassuring words, a calm voice, and comforting touch if appropriate
• Do not argue or try to convince the person
• Investigate their concern
• Find a reassuring solution
• Use distraction to redirect attention onto something positive or pleasant
• Consider asking about whatever frightened them
• Look for environmental causes

• Listen
• Offer reassure
• Remove triggers or sources of stress

• Late stage sleep issues
  • Changes in sleep-wake patterns
  • Nighttime awakenings
  • Hallucinations
  • Illusions
  • Nightmares
• Practice good sleep hygiene
  • Consistent routines
  • Supportive environment
• Get exercise
• Use bright light therapy
• Regulate diet
• Offer reassurance and comfort
• Investigate for possible causes
• Try to find reassuring solutions
• Use distraction
• Modify the environment to remove any potential triggers or sources of stress

Written by:
Catherine M. Harris, PhD, RNCS.
Mindy J. Kim-Miller, MD, PhD

Edited by:
Sasha Asdourian

www.LightBridgeHealthcare.com

Click here to open Certificate of Completion

• Allen RS, Burgio LD, Fisher SE, Hardin JM, & Shuster JL, (2005). Behavioral characteristics of agitated nursing home residents with dementia at the end of life. The Gerontologist 45: 661-666.
• Bayles, K.A., Tomoeda, C.K., Cruz, R.F. & Mahendra, N. (2000). Communication abilities of individuals with late-stage Alzheimer Disease.Alzheimer Disease and Associated Disorders, 14 (3), 176-181.
• Bernick L, Nisan C, Higgins M. (2002). Care of the body: maintaining dignity and respect. Perspectives.;26(4):10-4.
• Boyd CO and Vernon GM. (1998). Primary care of the older adult with end-stage Alzheimer’s disease. The Nurse Practitioner. 23 4:63–83.
• Bliwise DL. (1993). Sleep in normal aging and dementia. Sleep, 16, 40-81.
• Broton, M., & Koger, S.M. (2000). The impact of music therapy on language functioning in dementia. Journal of Music Therapy Association,37 (3), 183-195.
• Calkins M; Szmerekovsky JG; Biddle S. (2007). Effect of increased time spent outdoors on individuals with dementia residing in nursing homes. Journal of Housing for the Elderly. 21(3-4): 211-28.
• Chalmers, J. (2000). Behavior management and communication strategies for dental professionals when caring for patients with dementia.Special Care in Dentistry, 20 (4), 147-154.
• DeLegge MH. (2008). Enteral feeding. Current Opinion in Gastroenterology24(2): 184-9.
• Eisdorfer C, Cohen D, Paveza GJ, et al. (1992). An empirical evaluation of the global deterioration scale for staging Alzheimer’s disease.American Journal of Psychiatry 149(2):190–194.
• Ekman, S., Norberg, A., Viitanen, M. & Winblad, B. (1991). Care of demented patients with severe communication problems. Scandinavian Journal of Caring Science, 5 (3), 163-170.
• Epps, C.D. (2001). Recognizing pain in the institutionalized elder with dementia. Geriatric Nursing, 22 (2), 71-77.
• Gleeson, M. & Timmins, F. (2004). Touch: a fundamental aspect of communication with older people experiencing dementia. Nursing Older People 16 (2), 18-21.
• Gotell, E., Brown, S., & Ekman, S. (2002). Caregiver singing and background music in dementia care. Western Journal of Nursing Research,24 (2), 195-216.
• Hoffman, SB & Kaplan M. (1996). Special care programs for people with dementia. Health Professions Press.Baltimore.
• Kim, W.J., & Buschmann, M.T. (1999). The effect of expressive physical touch on patients with dementia. International Journal Nursing Studies, 36 (1999), 235-243.
• Martin JL; Ancoli-Israel S. (2008). Sleep disturbances in long-term care. Clinics in Geriatric Medicine, 24(1): 39-50.
• O’Donovan, S. (1996). A validation approach to severely demented clients. Nursing Standard. 11 (13-15), 48-52.
• Paniagua MA; Paniagua EW. (2008). The demented elder with insomnia. Clinics in Geriatric Medicine, 24(1): 69-81.
• Prigerson, HG (2003). Costs to Society of Family Caregiving for Patients with End-Stage Alzheimer’s Disease. N Engl J Med. 2003 Nov 13;349(20):1891-2.
• Rao V; Spiro J; Samus QM; Steele C; Baker A; Brandt J; Mayer L; Lyketsos CG; Rosenblatt A. (2008). Insomnia and daytime sleepiness in people with dementia residing in assisted living: findings from the Maryland Assisted Living Study. International Journal of Geriatric Psychiatry. 23(2): 199-206.
• Vitiello MV & Prinz PN. (1989). Alzheimer’s disease: Sleep and sleep/wake patterns. Clinics in Geriatric Medicine 5 (2), 289-298.
• Vitiello MV, Bliwise DL & Prinz PN. (1992). Sleep in Alzheimer’s disease and the sundown syndrome. Neurology, 42(6, suppl.), 83-94.
• Volicer L. (2005). End-of-life Care for People with Dementia in Residential Care Settings. Alzheiemer’s Association. Retrieved from http://www.alz.org/national/documents/endoflifelitreview.pdf.
• Watts V; Turnpenny B; Brown A (2007). Feeding problems in dementia. Geriatric Medicine, 37(8): 15-6, 18-9.