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Dementia changes the way people act. This places enormous stress on the people who love and care for them. A good way to deal with that stress is to make positive changes in the environment that reduce the occurrence of upsetting behaviors.

How can you cope with dementia in someone close to you? Dementia can make huge changes in the way people behave. People with dementia fear the loss of their memory and thinking skills. They fear the loss of who they are. And very often their worst fears are realized. This article will focus on the things caregivers can do to alter the environment of someone who has dementia so that upsetting behavior isn't quite as frequent. Caring for someone who has dementia is, as Nancy Mace and Peter Rabins put it, a 36-hour day, but there are simple and sensible changes that make the job easier.

Mace and Rabins write about the "6 R's" of coping with dementia in loved ones: restrict, reassess, reconsider, rechannel, reassure, review. Restrict behaviors that endanger anyone's safety, whether it is the safety of the patient, or someone else in the home, or you yourself. Reassess the behaviors to look for physical causes. Urinary tract infections are very often tied to "crazy" behavior. Reconsider events from the patient's point of view. Taking care of someone who used to take care of you requires a major shift in attitude for both of you. Rechannel behaviors into safer and saner results. My very insistent father once insisted that my dead mother had told him to pour gasoline over the piano and light it on fire. I persuaded him that she must have meant to use extra matches to burn some old sheet music that had been eaten by silverfish (and took away the gas can and put a lock on the gas tank of my car).  Reassure your loved one after acting out that you still care for them, although it's OK to look out for your own emotional needs in non-emergency situations. Review situations and think about what would make things better next time.

1. People who have dementia often make false accusations

"You stole my watch!" "You are trying to poison me!" "You want me to die so you can inherit my money!"

People who have dementia or Alzheimer's often accuse family members and caregivers of terrible things. While elder abuse is a reality, more often than not, these accusations are not true. Many forms of dementia interfere with short-term and autobiographical memory. When short-term memory is impaired, people forget where they put things. When autobiographical memory is impaired, people forget who their friends are.

There is never any point in arguing with someone who has dementia. Your logic will likely be lost on them. If an object is missing, the best thing is to find it. If a horrible behavior is alleged, there may be little you can do but wait for the accusation to pass. But it is always possible to respond with kindness:

  • Don't take accusations personally. Paranoia is a response of a failing brain doing its best to protect its owner. Paranoia isn't your fault, but it isn't theirs, either.
  • Don't try to reason to prove your innocence. Many forms of dementia express themselves in perserverative behaviors. The person you are caring for may just dig in their heels and repeat their assertions of guilt over and over again as long as you continue to argue with them.
  • Stay calm. Nothing negative is likely to happen to you. If you are calm, their upset is less likely to escalate.
  • Keep the environment calm. Turn off the TV. Shut out noises from other rooms. Make sure there are no upsetting odors in the room. Sometimes an odor is a trigger for negative emotions. There's a kind of olfactory memory that may stay intact longer than verbal memory. If there has been prominent odor (feces, for example) during a previous blowup, getting rid of that odor may calm the current blowup.
  • If you do discuss the situation, keep your answers short and to the point. A simple answer is more likely to be heard and understood.
  • If an item disappears frequently, keep a duplicate. The author of this article provided care for a man who often lost his socks. At the time of his passing, that man had 700 pairs of socks. You may not want to go to this extreme, but simply having a backup can belay an accusation of theft.
  • Seek support from people who've "been there". Accusations of intent to harm are particularly painful. Discussing your own feelings with someone who understands can help you maintain your own emotional equilibrium in a trying situation.

2. Dementia often interrupts sleep patterns

The loved one you care for may sleep all day and then be active at night when you need your own rest. This pattern may be part of sundowning, symptoms that get worse in the late afternoon and continue into the evening, or it may be a reaction to events you can control. Here are some things to try when your loved one keeps you up all night.

  • Make sure there is bright light in the patient's room during the day and the lights are turned down at night. Exposure to just 20 minutes of bright light before 9 am often resets the biological clock to allow for normal fatigue toward the end of the day.
  • If your loved is in a nursing home or long-term care facility, time your visits to coincide with changes in shift. You will be there to insulate your loved one from the loud conversations and background noises that accompany shift change, and you will be able to get a report on the events of the day. Just be considerate of the needs of staff at end of shift.
  • There may a problem of sundowning, a consistent pattern of worsening symptoms late in the day. Be aware that neither aromatherapy, music therapy, therapeutic touch, and multisensory therapy (placing the patient in a garden or a specially designed therapy room to relax) nor pharmaceutical interventions such as haldol, Seroquel, and tranquilizers will be completely successful. Ask the doctor about melatonin. (Don't give it on your own. It can interact with some of the medications used for dementia.) Melatonin encourages sleep. It is important not to give it during the day, only when you want the patient to sleep.

3. People who have dementia may become agitated

A textbook definition of agitation is a state "(1) occurring in patients with a cognitive impairment or dementia syndrome; (2) exhibiting behavior consistent with emotional distress; (3) manifesting excessive motor activity, verbal aggression, or physical aggression; and (4) evidencing behaviors that cause excess disability and are not solely attributable to another disorder (psychiatric, medical, or substance-related)" (International Psychogeriatric Association). In plain language, agitation is acting out an upset aggressively beyond a reasonable level of alarm.

Nursing homes tend to try to medicate agitation away. They give patients antidepressants like Remeron and Remeronsoltab (mirtazapine). They give patients antipsychotics like Seroquel (quetiapine). They hand out donepezil (Aricept) and memantine (Nemanda). All of these drugs are "better than nothing," but they are not the only approach to the problem. Here is a way to deal with agitation without drugs:

  • First, consider safety. If patients endanger themselves or others, they have to be stopped.
  • Then, consider non-neurological complaints that may be making the patient edgy. Constipation, urinary tract infections, difficulty swallowing food, undiagnosed hearing loss, undiagnosed visual disturbances (floaters are a major problem in patients who have diabetic retinopathy), bedsores, and arthritis pain all contribute to agitation. Get treatment for the underlying physical problem and agitation may go away.
  • Then consider the most effective non-drug intervention for agitation in dementia, music.
Music the patient associates with happy times reduced agitation and emotional pain. The more personal you can make it, the better. If your loved one likes to listen to you playing an instrument or singing, then it is best you provide the music. But recorded music also works.

There are a few limitations to music therapy. The benefits of playing music the patient likes are short-term. You can't play music today and expect improvement tomorrow. And not every kind of music is helpful to every patient. Nursing homes will often take a "one song suits all" approach to playing Muzak-like background music that some patients find annoying. But if you find the right music for the person you are caring for, it usually is calming.

Numerous other non-drug interventions for agitation exist. Acupuncture, acupressure, aromatherapy (especially with lavender oil), massage therapy, light therapy, sensory garden intervention, cognitive stimulation, snoezelen, dance therapy, and transcutaneous electrical nerve stimulation (TENS) therapy all offer short-term benefits. But music therapy is a reliable and easy method of reducing agitation.

Therapeutic touch is a common nursing intervention for agitation in dementia. There is no doubt that therapeutic touch is effective. However, when the patient no longer gets it, agitation tends to increase to levels beyond what they were before.

4. People with dementia tend to wander off

Everybody gets lost occasionally. People who have dementia may get lost even when they attempt to go to familiar places, like the grocery store, to a friend's house, or to a church or social event. Sometimes someone who has dementia simply won't remember where they were going or how they got there. In forms of dementia that are associated with repeated, perseverative behavior, like Alzheimer's disease, frontotemporal dementia, and traumatic brain injury, the patient may simply walk and walk and walk because they are "stuck" in a pattern of walking.

Nursing homes often place alarms on patients that signal nurses when the patient attempts to leave the bed or lock the doors when the patient tries to get out. But how can you deal with loved ones who wander away from their own home?

  • Give them a card with simple instructions to wait for someone to find them.
  • Buy them a medical alert bracelet with contact numbers for police and first responders to call when they are found.
  • Consider cell phone apps and chips that can be placed in the sole of a shoe.

5. People who take care of people who have dementia tend to get very, very tired

If you are taking care of someone who has dementia, it is essential that you find time to take care of yourself. To do that, nothing is more important than having clear authority to take care of your loved one. Make sure one person and only one person has final say on the care of the patient who is unable to decide for himself or herself. Make sure one and only one person has final responsibility and authority over financial matters. 

And don't be afraid to take time off now and then. Your loved one's medical emergencies may make taking care of yourself difficult, but that's when you need to make time to refresh, restore, and reevaluate. Taking care of someone who has dementia does indeed feel like a 36-hour day, but the rewards of doing the right thing follow you for the rest of your life. Get your own rest so you can be there for your loved one for the long haul.

  • Evans LK. Sundown syndrome in institutionalized elderly. J Am Geriatr Soc (1987).35(2):101–8. doi:10.1111/j.1532-5415.1987.tb01337.x
  • Oliveira AMD, Radanovic M, Mello PCHD, Celestino DL, Forlenza OV, Buchain PC et al. Nonpharmacological interventions to reduce behavioral and psychological symptoms of dementia: a systematic review. BioMed Res Int 2015. 2015: 218980.
  • Woods DL, Craven RF, Whitney J. The effect of therapeutic touch on behavioral symptoms of persons with dementia. Altern Ther Health Med 2005. 11: 66.
  • Yang MH, Lin LC, Wu SC, Chiu JH, Wang PN, Lin JG. Comparison of the efficacy of aroma-acupressure and aromatherapy for the treatment of dementia-associated agitation. BMC Complement Altern Med 2015. 15: 93.
  • Photo courtesy of SteadyHealth

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