Sundowning, Sundown Syndrome

Sundowning refers to increased agitation, restlessness and nighttime wandering that begins around dusk in many people with dementia, particularly those in advanced stages of disease. Most of the general research on the topic refers to Alzheimer’s disease, with less focus on vascular dementia which is my father’s diagnosis.

Although the phenomenon of sundowning has been referred to in the literature for over 60 years, research findings vary dramatically. For instance, rates are estimated to range from 2.4 to 66 percent. Higher rates are reported by caregivers of non-institutionalized dementia patients. Theories to explain sundowning are also varied and include:

• maladaptive response to fatigue
• disordered circadian rhythm, possibly from damage to the suprachiasmatic nucleus of the brain's hypothalamus
• diminished natural light coupled with dementia-associated sensory and cognitive impairments especially visual impairment (agnosia), that limit the ability to decipher what is in the environment
• reactive distress and anxiety regarding people who appear strange
• decreased environmental stimulation and caregiver availability
• increased pain or discomfort (i.e. from arthritis, constipation, etc.)

Treatments

Although studies have not been able to establish the effectiveness of these specific therapies, suggestions include:

• caregiver reassurance
• scheduling activities around the time when sundowning occurs
• providing adequate light
• minimizing unnecessary or agitating noise (i.e. banging of dishes, loud conversations)
• light therapy (although research reviews do not support its effectiveness)

These are easy measures to initiate and might diminish agitation the time of the usual agitation.

Music Therapy

Studies have shown that daily music therapy, listening to either preferred music or classical music chosen by caregivers, reduces stress and agitation in patients with dementia.

Melatonin

Several dementia studies have shown that melatonin improves sleep quality and reduces sundowning behavior and night-time wandering. One study found no effect on insomnia in nursing home residents.

Melatonin may also help to prevent or treat delirium. In one study, melatonin was started at a dose of 2 mg at 8:00 p.m. for sundowning and sleep disorder in a dementia patient who also had symptoms of delirium, including agitation and aggression. Sleep improved with a week, and significant behavioural improvement was also noted within 2 hours of taking melatonin. A therapeutic trial with an additional dose of 2 mg given at 3:00 p.m. was started, and the patient’s symptoms gradually improved over the subsequent 2 weeks. A follow-up at 2 months showed no recurrence of symptoms of delirium.

More study is needed to assess this promising treatment.

Pharmacological Treatments

Studies show that antipsychotics are the most widely used "off label" treatment for sundowning and other dementia-related behavioural disturbances. Risperidone (one of a newer class of medications referred to as atypical antipsychotics) has been shown to reduce aggressiveness, wandering, and sleep with less severe side-effects than first generation antipsychotics. Although off label use of risperidone is common, it has only been specifically approved for use with dementia patients with severe aggression and/or psychosis who pose a risk to themselves and others.

Side-effects may include sleepiness, agitation, anxiety, headache, trembling, excessive saliva, stiffness, leg restlessness, dizziness, fast heart rate, increased weight gain and risk of diabetes, apathy, and emotional withdrawal. Although atypical antipsychotics are less prone than other antipsychotics to cause severe side-effects such as muscle twitching and Parkinson’s disease-like movement problems, such symptoms can still occur. Not everyone who takes risperidone will experience side-effects.

Risperidone and other antipsychotics have significant safety risks, and have been shown to increase the risk of death. Extreme caution should be used in prescribing neuroleptic drugs for patients with vascular dementia due to significantly increased risk of stroke. Despite warnings issued by Health Canada, the use of risperidone and other antipsychotics for the behavioral management of dementia patients continues to soar, particularly in long-term care where dementia patients are likely to experience increased behavioural challenges and where resources to manage those challenges are limited (see The Star article).

The class of drugs called hypnotics (i.e. bendodiazepines) are not considered appropriate for use with dementia patients. Although the use of such drugs may decrease wandering, they have also been shown to increase confusion, agitation and risk of falls.

Donepzil (Aricept) is the most widely used AChIs drug therapy to slow the process of decline in patients with mild to moderate symptoms of Alzheimer's disease. Other AChIs include rivastigmine (Exelon) and glantamine (Reminyl).

Between 40 and 70 per cent of people with Alzheimer's disease may experience some benefit from these drugs, with symptoms showing improvement temporarily (for between six and 12 months in most cases) and then gradually worsening over the following months. Compared to placebo, benefits are small but significant, and may include: reduced anxiety, improvements in cognition, motivation, memory and concentration, and ability to continue daily activities (eg personal care, shopping, dressing).

Similar benefits have been reported for vascular dementia patients, but not in activities of daily living. It is not clear whether these drugs also have benefits for behavioural changes such as sundowning, agitation and aggression. Trials in this area have yielded mixed results.

References

Bruser, D., McLean, J., & Bailey, A. (2014, April 15). Use of antipsychotics soaring at Ontario nursing homes. The Star. Retrieved from https://www.thestar.com/news/canada/2014/04/15/use_of_antipsychotics_soaring_at_ontario_nursing_homes.html

Goga, J. K. (2014). Dignifying dementia: Accepting the limitations of medications. Mental Health Clinician 4(4), 162-163.

Jonghe, A., Munster, B. C., & Rooij, S. E. (2014). Effectiveness of Melatonin for Sundown Syndrome and Delirium. Journal of The American Geriatrics Society, 62(2), 412. doi:10.1111/jgs.12671

Khachiyants, N., Trinkle, D., Son, S. J., & Kim, K. Y. (2011). Sundown syndrome in persons with dementia: an update. Psychiatry Investigation, 8(4), 275-287. doi:10.4306/pi.2011.8.4.275

Lammers, M., & Ahmed, A. I. (2013). Melatonin for Sundown Syndrome and Delirium in Dementia: Is It Effective? Journal of the American Geriatrics Society, 61(6), 1045-1046. doi:10.1111/jgs.12296

Zare, M., Ebrahimi, A. A., & Birashk, B. (2010). The effects of music therapy on reducing agitation in patients with Alzheimer's disease, a pre-post study. International Journal of Geriatric Psychiatry, 25(12), 1309-1310. doi:10.1002/gps.2450

Additional Information

Iowa Geriatric Education Center https://www.healthcare.uiowa.edu/IGEC/IAAdapt/

National Nursing Home Quality Improvement Campaign https://nhqualitycampaign.org/

Opa Goes to the Dominican Republic

La Romana, Dominican Republic in October 2014. A picture says a thousand words.

Opa Turns 86!

We began celebrating Opa's birthday at 4:00 p.m. on August 13th.

As Opa'd requested, there were rouladen and spaetzle, followed by cake and coffee. But what Opa seemed to enjoy the most, besides the presents, were the Elder Flower Martinis that we had before dinner.

Since Opa had eaten more than usual earlier that day, I didn't expect the martinis to have the effect that they did. Oops! And I worried that Opa might not make it to dinner, but I underestimated his stamina.

Opa was in great spirits for the entire day, laughing, joking and celebrating as one does when it's someone's birthday. Whose birthday it was, Opa wasn't sure. But it didn't matter to him in the least.

There was only one little glitch and that was when I decided to ask our tipsy Opa how he felt about turning 86.

It was just a momentary glitch. Memory loss was a definite advantage for Opa who quickly recovered from the shock and continued celebrating until midnight when his "63rd" birthday officially came to an end.

Happy 86th birthday, Opa, our dear father, grandfather, uncle and friend! Sto Lat!

Health Problems Resolved

So the health problems that Opa experienced after the cystoscopy (which I wrote about here) appear to be resolved! Although it took a couple of weeks, the Urotonic Tea seems to have worked. Opa is symptom free and back in good form! 

Table

I wake up this morning to find that Opa has set the table during the night. There are four place settings perfectly arranged.

 

There is also a candy in a wrapper on one of the plates, a funnel in one of the three juice glasses, a ceramic bowl and two stacked glass bowls, a straw trivet, and four shot glasses (!). 

It reminds me of this poem --

Table

A man filled with the gladness of living

Put his keys on the table,

Put flowers in a copper bowl there.

He put his eggs and milk on the table.

He put there the light that came in through the window,

Sounds of a bicycle, sound of a spinning wheel.

The softness of bread and weather he put there.

On the table the man put

Things that happened in his mind.

What he wanted to do in life,

He put that there.

Those he loved, those he didn't love,

The man put them on the table too.

Three times three make nine:

The man put nine on the table.

He was next to the window next to the sky;

He reached out and placed on the table endlessness.

So many days he had wanted to drink a beer!

He put on the table the pouring of that beer.

He placed there his sleep and his wakefulness;

His hunger and his fullness he placed there.

Now that's what I call a table!

It didn't complain at all about the load.

It wobbled once or twice, then stood firm.

The man kept piling things on.
 

 ~ by Turkish poet, Edip Cansever

Update on Opa's Health

Opa has had some difficulties since his cystoscopy which was done a couple of months ago as part of his annual physical checkup. The results were good -- no signs of bladder cancer -- but he experienced some complications.

Since finishing the course of antibiotics, the incontinence has improved significantly, but there is still blood in the urine. Plus there are side-effects from the antibiotics: diarrhea, fatigue and poor appetite. Opa's not even interested in his all-time-favourite beverage, milk!

I called the clinic a couple of days ago, thinking that maybe the antibiotics didn't clear the urinary tract infection. I was told that no bacteria grew in the urine culture. This was surprising since the urinalysis revealed white blood cells which usually indicates a UTI. This was also troubling since now the most likely cause of Opa's symptoms is injury to the urethra or bladder from the cystoscopy.

Before returning to the urologist, who is likely to recommend some invasive treatment, we've decided to go the alternative medicine route.

A holistic health care professional recommended Urotonic Medicinal Tea to help soothe and heal the  urinary tract and Ultimate Flora Critical Care to restore proper digestive function and boost the immune system. Opa's iron levels tend to be on the low end of normal since he rarely eats meat, and are probably even lower now that he's had this bleeding problem for so long, so we've also added Floradix.

We were told that improvement of urinary symptoms is generally experienced in about three days with the Urotonic Tea. It's Day 2 now, so we'll see how it goes. Keeping fingers crossed!

How a Girl Can Get a Boy's Attention

"Opa, what's the best way for a girl to let a boy know that she likes him?"

"Oh, that's easy. First she should find out where he is and go there. Then she should make a few rounds so that he can see her. Very soon he will think, "Oh, there is that beautiful girl! I must ask her to go to the dance with me!"

"Is that how Oma got your attention?"

"Oh, yes!"