Dementia is a disease caused by damage to the brain which may manifest in many different ways While many people think of dementia as a 'memory disease' that is only the tip of the iceberg. Many of the symptoms of dementia relate to impairments in higher functioning such as insight, judgment, reasoning, and executive functions (mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully). These impairments often lead to difficulties in functioning safely and appropriately.
There are many types of dementia that are differentiated by the underlying cause of the brain damage. Alzheimer's Disease, the most common type of dementia, is caused by the progressive accumulation of a substance called amyloid in the brain which causes the brain cells to die. Vascular dementia, the second most common type of dementia, is caused by the death of brain cells due to lack of sufficient blood supply; this can be due to a large stroke, a number of small strokes, or most often, having many very tiny strokes, so small that no one even knows that they have had them until there are enough to cause cognitive impairment.
Since the brain damage that causes dementia is an ongoing process, dementia is a progressive condition and over time the symptoms become more profound. As the dementia progresses, one can develop difficulties speaking and understanding others and they can forget how to do daily tasks such as dressing and personal hygiene. People with dementia often develop incontinence and difficulties walking and later in the illness can have difficulties swallowing.
There are a few treatments that have shown some ability to slow down the progression in certain types of dementia, unfortunately, there are no treatments yet that can stop or reverse dementia.
The overwhelming majority of people with dementia will develop one or more behavioral or psychiatric symptoms at some point in the course of their illness. These can present as mood changes, depression, anxiety, irritability/aggression, wandering, restlessness, sleep disturbance, appetite disturbance, apathy, and psychotic symptoms (delusions and hallucinations). These symptoms affect the safety and quality of life of people with dementia as well as that of those who love them and care for them.
Despite the large number of Americans with dementia that have behavioral/psychiatric symptoms, there are no FDA approve treatments for these disturbances. That being said, there are many treatments that can be effective at addressing these symptoms. Psychiatrists often utilize medications such as antidepressants, mood stabilizers, antipsychotics, and others to treat these symptoms when they develop. Often times is requires a combination of medications to address the symptoms. Modification of the environment can also be helpful in some circumstances.
At some point, most patients with dementia will develop difficult behaviors. These may range from annoying (asking the same question over and over), to disturbing (talking to people that aren't there), to dangerous (putting metal in a microwave, leaving something on the stove, leaving the house and getting lost). It is important for caregivers to understand that people with dementia cannot help these behaviors, they are not aware of their limitations.
It is understandable to have an initial instinct to try and reason with someone with dementia, to explain to them why the things they are doing are not ok, after all, this is probably how you have interacted with them in the past. However, people with dementia often do not have insight into their limitations and cannot be convinced that there is anything wrong with what they are doing. In the rare times where the person can understand this, it is not retained...they just can't remember.
Trying to reason with someone with dementia is often a surefire way to frustrate the both of you. Instead, we suggest trying the three D's...Distract, Deflect, Defer. Try to gently steer them away from the thing they are focused on...ask them an unrelated question, show them pictures on family members on your phone, turn on the television. Sometimes it works, sometimes it doesn't. Unless it is a matter of safety, it is better to be kind, than to be right. If you are unsure about how to respond to a person with dementia in a particular circumstance, you may wish to ask yourself "What is the kindest thing to do in this situation?" People with dementia can often be truly 'in the moment', and if one can get them to move on into the next moment, the issue that was bothering them before will be forgotten.
A number of the difficult behaviors in dementia are what I refer to as normal responses to abnormal circumstances. For example, if tomorrow morning you woke up and there was a stranger in your bedroom telling you they are going to take of your clothes, you may be a bit upset. In fact, you may yell at them to go away, threaten to call 911, or try to hit them. We would consider these to be normal reactions to the situation. To a person with dementia, the perception is no different; they do not realize that they need help with these things, they do not recognize the person trying to help them, and they respond with fear and anger. Although their responses may be understandable, we have to consider the health and safety consequences of not making sure the person gets up and dressed and has their personal hygiene attended to. Skin and urinary tract infections, tooth decay, inadequate nutrition and hydration can all be consequences of inadequate care. Addressing the person in a gentle, non-threatening way may not be enough to get them to cooperate, although it is certainly a start. Working closely with caregivers and treating physicians is often the best way to address the behaviors in a way that take into account both the circumstances as well as the disease process. Understandably, this is not something that is simple.
A common feature of dementia is a change in personality. Occasionally we may see someone who has been grumpy their whole life become very loving or someone who has always been anxious become very calm and passive, however, most often we see people's personalities become exaggerated, almost to the point of becoming a caricature of themselves.
This comes about in part due to the loss of mental flexibility and coping skills. As one loses these skills, they fall back upon the long-standing, deep-seated coping skills, the ones that they have relied upon for most of their lives.
Along these lines, people with damage to a part of the brain called the frontal cortex, which is quite common in dementia, may often present with loss of inhibitions and may say or do things that they normally would not and which seem out of character. Inappropriate emotional expression, sexual behaviors, explosive anger, as well as the development of apathy (not having any interest or motivation in anything) can be typical symptoms of frontal lobe damage from dementia.
When faced with the difficult behaviors that can occur in dementia it is important to try one's best separate the disease from the person.
Because most people with dementia are older, they can be at increased risk of developing other medical problems, and when they do, they can sometimes experience Delirium. Delirium is a medical condition characterized by rapid change in mental states, restlessness or catatonia, rapid changes in levels of alertness, increased confusion, anxiety and hallucinations. Delirium is a medical condition, not a psychiatric one since it is caused by the underlying medical issue. Common causes of delirium include: urinary tract infections (UTIs), pneumonia, falls, strokes, surgical procedures/anesthesia, and narcotic pain medications.
Typically, once the underlying medical issue has been resolved, the delirium will begin to clear. Often times in people with dementia, an episode of delirium sets them back quite a ways and they frequently will not return to quite the previous level of functioning. The medical condition/delirium knocks them down ten rungs on the ladder and they may only climb back up seven or eight.
If you are involved with a person with dementia, you know firsthand how difficult and demanding it can be. Whether it is a spouse, parent, sibling, or friend, the relationship may be tested by the way the dynamic is affected by the dementia. While often people do not begrudge having to care for a loved one, the frustrations that dementia can cause can make it difficult to care for someone all of the time and often bring up feelings of helplessness and uncertainty. Sometimes if the relationship has always been strained this can exacerbate the stress.
In these circumstances, it is important to have a team of professionals that can offer guidance and support. This can include the person's primary care physician, neurologist, psychiatrist as well as Geriatric Care Managers. It is sometimes recommended that the caregivers make sure to take care of themselves as well. This sometimes means having their own care team of friends, family, and even professionals such as their own physician or therapist. Caring for someone with dementia is difficult and there is no shame in a caregiver needing help; it is not a sign of weakness and does not mean that they do not love the person with dementia enough. It is often because they love the person that it is difficult to see them impaired and suffering.