86 year old Susan was a client of ours whose dementia had been progressing steadily over several years. Her caregivers were a set of dedicated, compassionate, gentle and caring people. They were committed to giving her the best quality of life possible, keeping her clean and comfortable, preventing skin breakdowns and infections, and providing her with nutritious food and a variety of stimulating experiences. Despite their skills and caring, at one point Susan started becoming aggressive while they were helping her with personal care, yelling, threatening, grabbing their hands and wrists and not letting go, and more. When she “turned on them” it was a shock.
As dementia progresses, caregivers often find that their loved one’s personality and/or behaviour changes. It can be particularly challenging when they suddenly and uncharacteristically become physically or verbally aggressive. Caregivers need to be detectives to search for the meaning of this behaviour. While it can be challenging to move beyond the emotion you may feel and focus on the reason, shifting into a questioning mindset is key. And when you know what to look for, it is, as Sherlock Holmes might say, “Elementary, my dear Watson.” This month Elder Voice looks at what may be behind aggressive behaviour in dementia.
Aggressive behaviour is often a reaction to something; it is a way your loved one has for trying to communicate with you when they otherwise can’t. In other words, there is probably a good reason for aggressive behaviour. It is not random and does not “just happen” or come out of the blue. Consider the context in which it occurs.
Issues that may trigger physical or verbal aggression include the following:
- Delirium due to a physical condition such as a urinary tract or chest infection;
- Over-medication, or a reaction from the interaction of multiple medications;
- The existence of pain which the loved one is unable to locate, describe or even verbalize. It may be something that is chronic such as arthritis, or it may be something that has happened such as a fracture, pressure sore, toothache or mouth infection. When they are moved or touched in a way that contacts the area of pain, they react to try to stop it.
- Discomfort due to constipation, environment (heat/cold), seating or positioning, and others;
- Fear of the person giving the care. Even if it is a family member or someone they have known for a while the person may forget who that person is or the caregiver may remind them of someone else with whom they are not comfortable;
- Fear of the situation: Especially during intimate care or bathing, to have intimate touch by someone can be embarrassing and threatening especially if they do not understand what is happening or why;
- Historical reasons for the behaviour such as a history of physical or sexual abuse.
- Visual or auditory hallucinations–seeing or hearing things or people that are not really there but seem very real to them;
- Over tiredness; and
- Feelings of loneliness or abandonment
To understand what the problem is consider the above and also the events that precede, accompany, or trigger the behaviour. Try to determine if there is a pattern to the outbursts that you can detect. You might want to keep a log for several days and see if a pattern arises.
Some of the things to observe are the following:
- Bowel movements regularity;
- Changes in urine or urinating patterns;
- Time of day or night at which the behaviour occurs;
- Who else is around;
- Where they are at the time, e.g. in a chair or in bed;
- What else is happening at the time (i.e. feeding, TV or other disturbance, etc.)
- What was happening when the behaviour started;
- Whether there have been changes in medications or routines;
- If there has been a change in caregivers;
- If it happens when the person is being moved;
- If they appear to be talking to someone or watching something you cannot see;
- Whether it occurs around certain care, or when a particular part of the body is involved, such as intimate care, eating, or when an arm or leg is moved; and
- if there is any skin redness or open areas.
It is very important that you involve professionals. The family doctor may order tests, change or review medications, or refer you to a specialist in Geriatric Mental Health. A pharmacist can review medications as well for possible unintended side effects. Diamond Geriatrics can do a full assessment for you which includes looking at the environment, behaviours, and interactions.
Sherlock Homes would look at a mystery from every angle. It is sometimes helpful for caregivers to step back and think about how they are approaching the person they are caring for and see if there is anything about their own behaviour which may be contributing to the escalation in behaviour. Are you feeling stressed and is this influencing how you provide care? Do you need to slow down and approach your loved one more slowly, so they are not startled? Maybe you need to explain what you are going to do, or find a way to provide distraction.Do you need to have someone take over for you or work with you? Try to remember that as dementia progresses, the skills and approaches you use in providing care may need to change. Also, what worked one day may not the next day so you need to be flexible. Most important, remember that it is not a rejection of you or an indication of the kind of care you are trying to provide.
In summary, it`s easy to believe the actions of a loved one with dementia may seem random. There may be some truth to that belief at times but not usually as it relates to aggressive behaviour. It may not be easy for you to cope with, but the behaviours may be the clearest way that your loved on has to communicate with you. Your challenge (and opportunity) is to realize this, and to solve the puzzle.
