Archive for Facts about Dementia

Alzzzzzzheimer’s: Sleep and Dementia

i love sleeping

Unfortunately for the 15 million caregivers and 5.2 million living with Alzheimer’s disease (AD), sleep disturbances are a common occurrence among those with dementia. These disturbances can diminish the caregiver’s and care recipient’s quality of life. Research indicates that nearly half of those diagnosed with Alzheimer’s will exhibit disrupted sleep (Salami, Lyketsos, & Rao, 2011) at some point during their illness.  In AD, sleep disturbances are typically characterized by waking up throughout the night, daytime napping, and daytime drowsiness (Salami, Lyketsos, & Rao, 2011). Lack of sleep or poor sleep quality can also cause disorientation, confusion, and disordered thinking during the day, compounding the cognitive symptoms the person may already be experiencing. Furthermore, sleep disturbances, “increase the risk of physical and psychological morbidity in the persons with dementia and their caregivers” (McCurry et. al., 2011, p.1393) and increase the likelihood of institutionalization.

Sleep is clearly a prevalent issue in AD, but how do we overcome these challenges? More research is needed to effectively answer this question, but below are some evidence-based recommendations that might assist in promoting regular, good quality sleep.

Non-Drug Interventions

  • Maintain regular times for getting to bed and arising.
  • Establish a comfortable, secure sleeping environment — reduce noise or other stimuli, make sure bedding and room temperature are comfortable, provide nightlights and/or security objects.
  • Discourage staying in bed while awake or watching television while in bed; use the bedroom only for sleep.
  • Increase sunlight exposure during the day.
  • Have the person avoid excessive evening fluid intake and empty the bladder before going to bed.
  • Avoid daytime naps if the person is having trouble sleeping at night.
  • Treat any pain symptoms.
  • Engage in regular daily exercise, but no later than 4 hours before bedtime.
  • If the person is taking cholinesterase inhibitors (e.g. Exelon, Aricept) avoid giving the medicine right before bed


Final Thought

If you notice disturbed sleep in the person with dementia, it may be helpful to have a physician, such as a neurologist, give his opinion. Medication side effects, chronic illnesses, mood disorders, etc., could be contributing to the problem, and a medical doctor is best to address these issues.


Cole, C., & Richards, K. (2005). Sleep and cognition in people with Alzheimer’s disease. Issues In Mental Health Nursing26(7), 687-698.

McCurry, S. M., Pike, K. C., Vitiello, M. V., Logsdon, R. G., Larson, E. B., & Teri, L. (2011). Increasing Walking and Bright Light Exposure to Improve Sleep in Community-Dwelling Persons with Alzheimer’s Disease: Results of a Randomized, Controlled Trial. Journal Of The American Geriatrics Society59(8), 1393-1402. doi:10.1111/j.1532-5415.2011.03519.x

Salami, O., Lyketsos, C., & Rao, V. (2011). Treatment of sleep disturbance in Alzheimer’s dementia. International Journal Of Geriatric Psychiatry,26(8), 771-782. doi:10.1002/gps.2609

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Frontotemporal Dementia: What is it and how to cope?

Although Alzheimer’s disease may be credited as the most notorious memory loss disorder, it is certainly not the only dementing disease. There are many other types of dementia — upwards of 50 different types. Depending on the type of dementia, the disease may have different symptoms, trajectories, or treatment options. Frontotemporal dementia is one non-AD type of dementia.

What is it?

Frontotemporal dementia (FTD) accounts for approximately 15% of cases of dementia. It is characterized by degeneration in the frontal (executive functions) and temporal lobes (memory, language, emotions) of the brain.  In Alzheimer’s the person may have stark cognitive deficits early on in the disease (e.g. short term memory problems, word finding difficulties), but the person with FTD may have more obvious behavioral symptoms  in the early stages (such as spending copious amounts of money, eating without restraint, apathy, disinhibition, etc.). FTD also typically affects individuals at a younger age than those who are diagnosed with Alzheimer’s. Most people are diagnosed in their 50s or 60s.


FTD can be grouped into three different types

  • Behavioral variant frontotemporal dementia (bvFTD) takes its greatest toll on personality and behavior. It may begin with subtle changes that may be mistaken for depression. As bvFTD progresses people often develop disinhibition, a striking loss of restraint in personal relations and social life.
  • Primary progressive aphasia (PPA) affects language skills in early stages, but often also affects behavior as it advances. The two chief forms of PPA have somewhat different symptoms:
    • In semantic dementia, people speak easily, but their words convey less and less meaning. They tend to use broad general terms, such as “animal” when they mean “cat.” Language comprehension also declines.
    • In progressive nonfluent aphasia, people lose their ability to generate words easily, and their speech becomes halting, “tongue-tied” and ungrammatical. Ability to read and write also may be impaired.
  • FTD movement disorders affect certain involuntary, automatic muscle functions. These disorders also may impair language and behavior. The two primary FTD movement disorders are:
    • Corticobasal degeneration (CBD), which causes shakiness, lack of coordination, and muscle rigidity and spasms.
    • Progressive supranuclear palsy (PSP), which causes walking and balance problems, frequent falls and muscle stiffness, especially in the neck and upper body. It also affects eye movements.

How to cope?

As with other types of dementia, managing the behavioral changes that occur with the disease is a daunting task for any caregiver, potentially leading to burnout and distress.  Furthermore, research indicates that FTD caregivers may experience a greater financial, emotional, and psychological burden than their AD caregiver counterparts. Because of the extreme toll that caregiving can pose, the caregiver must take good care of themselves! Support groups and/or therapy may be very helpful outlets. Taking time out and enjoying free time as a caregiver is not frivolous but an essential component in preserving the caregiver’s mental and physical well-being.

Managing behaviors is a common issue when the diagnosis is FTD. Validating the person’s feelings and reality, taking time out for one’s self, implementing a regular routine, and consulting with a physician are all viable methods for tackling this issue.

Research continues to emerge which indicates that physical activity may help to stimulate learning and memory and effectively manage some of the symptoms associated with dementia (Ahlskog et al., 2011). Engaging the person in activities, particularly physical exercise, may be another helpful intervention for managing behaviors.


Ahlskog, J. E., Geda, Yonas E,M.D., M.S.C., Graff-Radford, N., & Petersen, Ronald C,P.H.D., M.D. (2011). Physical exercise as a preventive or disease-modifying treatment of dementia and brain aging. Mayo Clinic Proceedings, 86(9), 876-84. Retrieved from

Rabinovici, G. L. (2010). Frontotemporal Lobar Degeneration. CNS Drugs24(5), 375-398.

Seltman, R. R. (2012). Frontotemporal Lobar Degeneration: Epidemiology, Pathology, Diagnosis and Management. CNS Drugs26(10), 841-870.

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Not All Those Who Wander Are Lost

Wandering behavior is a common phenomenon among those that are diagnosed with dementia. Approximately 60%-67% of those with a diagnosis will exhibit wandering behavior over the course of their illness. Despite the prevalence of wandering, it remains a difficult issue to tackle and the consequences of a wandering incident can be dire. However, there are benefits to wandering, if done is a safe, supervised environment.

What is wandering?    

Wandering has proven difficult  to define because it is an inherently broad concept. In fact, a US Department of Veterans Affairs study (1985) concluded that its imprecision “defies definition”. Although there is not consistent agreement on what constitutes wandering some definitions include:

  • Behavioral problem of AD patients that involves cognitive impairment affecting abstract thinking, language, judgement, and spatial skills
  • Disorientation and difficulty relating to the environment
  • Aimless or purposeful motor activity that causes a social problem such as getting lost, leaving a safe environment, or intruding in inappropriate places
  • Meandering, aimless or repetitive locomotion that exposes the individual to harm; frequently incongruent with boundaries, limits, or obstacles

Wandering statistics

  • Up to 67% of those with dementia will wander.
  • 45% of wanderers will perish if not found in the first 24 hours
  • 83% have wandered before
  • 95% are found within 1.5 miles

Why does wandering occur?

The reasons why wandering occurs are as varied as the individuals that exhibit this pattern of behavior. Although it may not be readily apparent why the person with dementia is exhibiting wandering behavior, it likely originates from a physical, mental, or social need.

Determining Risk

  • Consider premorbid personality and lifestyle
  • Sleep disturbances sometimes predictive of wandering
  • Increased cognitive impairment correlated with increased likelihood of wandering behavior
Other Indicators:

  • Returns from a regular walk or drive later than usual.
  • Tries to fulfill former obligations, such as going to work.
  • Tries or wants to “go home,” even when at home.
  • Is restless, paces or makes repetitive movements.
  • Has difficulty locating familiar places like the bathroom, bedroom or dining room.
  • Asks the whereabouts of current or past friends and family.
  • Acts as if doing a hobby or chore, but nothing gets done.
  • Appears lost in a new or changed environment.

One interesting theory suggests that wandering in outdoor or woodland settings is a natural, human impulse and should be embraced rather than stymied. In Mape’s (2012) study, researchers piloted the idea of facilitating controlled wandering in a woodland environment in their study Wandering in the Woods. Researchers found after participants were exposed to outdoor exercise, subjects exhibited improved sleep, improved dietary intake, multi-sensory engagement and associated joy, increased verbal expression, and improved memory.

Where do they go?


Evidence-Based Interventions

Environmental Modifications

  • Provide safe place for person to wander, such as walking path or ‘man cave’.
  • Enhance visual appeal of environment with interesting décor.
  • Maintain safety by removing clutter and dangerous objects.
  • Remove ‘triggers’, such as car keys, from the environment.
  • Place locks out of the line of sight. Install either high or low on exterior doors.
  • Subjective barriers, such as camouflage doors and doorknobs, and dark floor mats.
  • Use devices that signal when a door or window is opened.
  • Use confounding locks on doors to prevent exit/entry.
  • Provide supervision. Never lock the person with dementia in at home or leave him/her in a car without supervision.
  • Use large print signs/photographs to assist in finding key areas.
  • Ensure pathway to bathroom is clear and accessible, especially at night. Restrict fluids an hour or two before bed to avoid nighttime wandering.
  • Avoid environments that are confusing and can cause disorientation, such as grocery stores, shopping malls, or large holiday gatherings.

Physiological and Psychosocial Interventions

  • Having a routine can provide structure and reduce restlessness.
  • Encourage regular exercise, such as walking after meals.
  • Identify the times of day that wandering may occur. Plan activities at that time.
  • Ensure all basic needs are met. Has the person gone to the bathroom? Is he/she thirsty or hungry?
  • Assess for and treat depression.
  • Provide social interaction and engagement.
  • Encourage the person to engage in meaningful activities.
  • Reassure the person if he or she feels lost, abandoned, or disoriented.  Validate feelings.
  • Engage person in stress relieving activities, such as music, art, massage, etc.


Bushnell, R., & Collins-Fadell, C. (2012, September 1). For those who wander. The Best of Aging(11).

Futrell, M., Melillo, K., & Remington, R. (2010). Evidence-based guideline: wandering [corrected] [published erratum appears in J GERONTOL NURS 2010 Mar;36(3):1p]. Journal Of Gerontological Nursing36(2), 6-16. doi:10.3928/00989134-20100108-02

Lai, C., & Arthur, D. (2003). Wandering behaviour in people with dementia. Journal Of Advanced Nursing44(2), 173-182.

Mapes, N. (2012). Have you been down to the woods today? Working with Older People18 (1), 7-16. doi:10.1108/13663661211215105

Robinson, L., Hutchings, D., Dickinson, H. O., Corner, L., Beyer, F., Finch, T., Hughes, J., Vanoli, A., Ballard, C., & Bond, J. (2007). Effectiveness and acceptability of non-pharmacological interventions to reduce wandering in dementia: a systematic review. International Journal of Geriatric Psychiatry22, 9-22. doi:10.1002/gps.1643

US Department of Veterans Affairs (1985) Dementia Guidelines for
Diagnosis and Treatment. Author, Washington, DC.

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Behavioral and Psychiatric Symptoms of Dementia

Research indicates that the behavioral and psychiatric symptoms of dementia (BPSD) are a major source of caregiver stress and burnout. BPSD affects approximately 90% of all dementia subjects and is associated with a range of poor outcomes, including “distress to patient and caregiver, long term hospitalization, misuse of medication, and increased health care costs” (Cerejeira, Lagarto, & Mukaetova-Ladinska, 2012, p. 1). The majority of care of Alzheimer’s patients is provided by family members in the home. In fact, in 2012 15.4 million family caregivers provided an estimated 17.5 million hours of unpaid care (2013 Alzheimer’s Disease Facts and Figures). Therefore, it is critical that these front line caregivers possess the necessary knowledge, resources, and skills to execute behavioral management effectively.

Behaviors and psychiatric symptoms associated with Alzheimer’s disease and other dementia can include some, any, or all of the following:

  • Agitation
  • Repetitive actions
  • Delusions
  • Hallucinations
  • Wandering
  • Anxiety
  • Dis-inhibition
  • Irritability
  • Depression

Although perhaps troubling, behavioral  and psychiatric changes can be effectively managed with proper techniques. However, this is certainly a challenging feat. The caregiver must be flexible in their approach; as the person with dementia progresses, the strategies the caregiver implements must accommodate cognitive changes.

Research studies on this topic recommend employing non-pharmacological strategies to behavioral management. Some of these strategies include:

  • Analyze for causes of disruptive behavior (e.g. pain, medical illness, fatigue, depression, loneliness, etc.)
  • Redirecting the person’s attention
  • Reassure the person — use calming phrases
  • Respond to emotion behind statements, rather than the words themselves
  • Modify the environment — decrease noise level and distractions
  • Simplify tasks and routines
  • Allow adequate rest between stimulating events
  • Find outlets for energy — take a walk, do household chores, or go for a car ride


Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. B. (2012, May 7). Behavioral and psychological symptoms of dementia. Frontiers in       Neurology(73), 1-21. doi:10.3389/fneur.2012.00073

Farran, C. J., Fogg, L. G., McCann, J. J., Etkin, C., Dong, X., & Barnes, L. L. (2012, May 1). Assessing family caregiver skill in managing behavioral symptoms of Alzheimer’s disease. Aging Mental Health15(4), 510-521. doi:doi:10.1080/13607863.2010.536140

Shaji, K. S., George, R. K., Prince, M. J., & Jacob, K. S. (2009). Behavioral symptoms and caregiver burden in dementia. Indian Journal of Psychiatry51(1), 45-49. doi:10.4103/0019-5545.44905

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