By Ken Schmidt

Introduction to dementia

Dementia is a word that is filled with a lot of different meanings for a lot of different people. To the elderly, the word has a negative, almost scary connotation as well as a stigma. If you are diagnosed as having dementia, you are suddenly classified as old, frail, forgetful and not able to take care of yourself or make your own decisions. To the young person, it means an “old people’s disease” that makes Grandma and/or Grandpa difficult to understand and care for because they ask the same questions over and over, may be confused about times and dates, and often seem to be in another world.

The perceptions of dementia mentioned above are symptoms of a condition that causes a decline in memory, communication difficulties, mood swings, and in some cases, seeing things that other people do not see. The symptoms vary depending on the cause of the symptoms. There are different causes or forms of dementia, such as frontotemporal dementia, vascular dementia, dementia with Lewy bodies, and dementia from Alzheimer’s. In some cases, dementia is part of another condition like Parkinson’s Disease or Huntington’s disease.

What do persons with dementia experience?

Physical symptoms include forgetfulness, losing things, problems with performing previously familiar tasks or activities, or difficulty with communication (e.g., finding the right words to communicate). The person with dementia may have difficulty with organizing, planning, reasoning, or solving problems. They lose things easily and can’t find them and get easily frustrated. They may have difficulty with performing basic tasks like getting dressed (coordination problems) or using the bathroom. The person may also experience a loss of or reduction in eyesight—especially peripheral vision. Hearing can also be affected (hearing lower-pitched voices better than higher-pitched voices).

Emotional or psychological changes include a change in personality, depression, anxiety, mood swings, agitation, and in some cases hallucination (seeing things other people don’t see).

Personality changes—A person with dementia symptoms may have been very confident, caring, considerate, and outgoing. But as the dementia progresses, they become fearful, self-centered, easily agitated, and sometimes aggressive. They may believe that family members are threatening them or stealing from them (delusions). Swearing (even formerly sweet elderly ladies), spitting, becoming socially inappropriate (in actions and words), or making sexual advances may appear as well.

Depression—A person with dementia may become depressed and/or experience grief over loss of their memory and/or a loss of independence or loss of the ability to do what they formerly could do (e.g., cook, play piano, walk without assistance, etc.). As a result, they feel hopeless, worthless, and/or helpless. The person may lose interest and/or motivation for doing things they used to like doing (activities or hobbies, like crocheting, music, fishing, etc.). A person may withdraw from other people (social isolation). They experience a sense of loss and grief that causes them to feel down emotionally. In severe cases, they may have thoughts of suicide or complete suicide.

Anxiety—A person with dementia may feel anxious or agitated in certain situations. This may cause them to be restless and want to move around or pace. This may happen especially with changes in their environment or residence, changes in caregivers, or due to fear and fatigue from trying to make sense out of a confusing environment. They may become over-stimulated with a noisy environment or noisy children.

Mood swings—A person with dementia may go from being calm and sweet one day to screaming and lashing out the next. The causes vary from being in pain, being hot or cold or fatigued, lack of hydration, or some medical illness, etc.

Hallucinations—A person with dementia may think that she can see or hear something that isn’t there or believe something that is not true. The person may smell, taste, feel, hear, or otherwise sense something that does not exist. Hallucinations can result from changes in the brain, or they can also be the result of health problems such as infection, being tired, or not eating properly.

Tips on communicating with and/or caring for a loved one with dementia

• Approach your loved one from the front (to avoid surprise); move slightly to the side and get down to their eye level so they feel like they are in control.
• Do not argue, use logic, scold, show anger, or make fun of your loved one.
• Acknowledge their feelings (“It sounds like you are anxious, worried, upset, afraid,” etc.).Reassure by letting them know you are there to help, they are in a safe place, etc.
• Re-direct or distract with a favorite activity, past-time, snack, beverage, subject of conversation (grandchildren, travel, favorite food, favorite sport, etc.). Ask them what they did for fun. Ask them what important lessons they learned in life, and so on.

Responding to repetitive questions*

• Respond to the emotions, not the words. For example, if you guess that a person is anxious, give a brief hug or hand squeeze while calmly answering the question. That may soothe them enough to stop the asking. Keep your answers brief.
• Distract with an activity.
• Focus on something they enjoy, like a snack or favorite beverage. Or ask them a simple question to get them thinking about something else, like, “The sky is blue today. Isn’t it nice?” Another idea is to ask them to help you with a simple chore they’re still able to do, like folding laundry.

*suggested by the Alzheimer’s Organization (www.alz.org)