Dementia – The Caregiver Guide

How you can help a family member suffering from dementia

Dementia is a general term for loss of memory and other mental abilities severe enough to interfere with daily life. It is caused by physical changes in the brain. Alzheimer’s disease is the most well known and most common, but that is not the only one. Vascular dementia, Parkinson’s disease, Frontotemporal dementia and Huntington’s disease (to name a few) can all-cause dementia. Most types are slow and progressive – by the time the person shows signs, the process in the brain has been happening for a long time.

Here we are not going to focus on the disease per se or the medications, instead, we will focus on what you (the caregiver) can do. When someone close to you is diagnosed with a disorder that causes dementia, the road ahead will be wrought with hard decisions, confusion, and frustration. Even for you. So we are here to share with you some good, scientifically-backed knowledge that will ease the journey for both of you.

Understand THE STAGES:

Dementia is more common in people over the age of 65, but it can also affect younger people in their 30s, 40s, or 50s.

In the early stage of dementia, the only person who may notice symptoms is family. Want to confirm your suspicions? Ask –

• If he or she is still able to handle his/her finances independently? This is often one of the first things to become problematic. The person may have problems with more complicated chores.
• Does he/she forget things like taking medicines?
• Is he/she getting lost in new places, repeating things and have difficulties at work?

People with moderate dementia may be severely impaired in solving problems and social justice. Try to not leave them alone or outside the house. The simplest chores might not be an issue, but they cannot do much else and begin to require assistance for personal care. Simple reminders won’t do.

People with late-stage dementia typically need someone’s help with almost all of their personal care and 24-hours supervision to ensure personal safety, as well as to ensure that basic needs are being met. If left alone, they may wander or fall, may not recognize dangers like a hot iron, may become unable to control their bladder or bowels (incontinent).

SIGNS OF THE FINAL STAGES:

You also need to know that dementia is unpredictable. For example, signs of the final stage of Alzheimer’s disease include some of the following:

• unable to move around on one’s own.
• unable to speak or make oneself understood.
• Needing help with most, if not all, daily activities, such as eating and self-care.
• difficulty in swallowing.

As a caregiver, you can follow the below advise:

1. A Person-Centered Approach:Understand the person’s lifestyle, hobbies, interests and likes/dislikes. Did they enjoy old Hindi songs? Did they like their tea strong? These may seem small things but helping them retain their individuality is crucial. A patient-centered approach is what this is called, and it ensures that they take part in activities they enjoy and even have the chance to try new things.
2. Prepare Your Home:

• Make sure the surroundings are safe and comfortable.
• Keep the house tidy and clutter-free.
• Keep all medicines under lock and key.
• Have nightlights and anti-skid mats.
• Keep car keys hidden.

It’s a good idea to keep some identity information on them, in case they do wander off and need to be brought back home.

3. Communication:

Because they cannot think, remember and reason, you might be confused about what they really want. Is he in pain? Does she want water? Why is he agitated?

Because they cannot communicate as you do, it doesn’t mean they cannot communicate at all.

• Take a deep breath and remember to be patient and have respect for them.
• Use simple, short sentences and pause frequently (no matter how odd it may seem to you or a stranger).
• Allow the person plenty of time to respond and don’t interrupt. It can break the pattern of communication.
• Don’t ask too many questions and never raise your voice.

A person with dementia will be able to read your body language. Sudden movements or a tense facial expression may cause upset or distress them and can make communication more difficult.

If you are getting irritated, take a moment to calm yourself down. Also, never treat them as if they are invisible, or talk to someone as if they’re not in the room because you need to help them retain their identity. If they still don’t understand, REPHRASE, don’t repeat. For example, if you want to know if they’re thirsty, don’t constantly ask them the same question. Point to a glass!

4. Handling Agitation & Difficult Behaviour:

The behavior has a purpose. Believe it or not, a person with dementia uses agitated behavior to communicate. Behaviour is triggered. Actively search for a potential cause (such as pain, physical illness, or overstimulation). Follow the “ABC analysis of behavior” – looking at the antecedents (A), behavior (B), and consequences (C) associated with an event to help define the problem and prevent similar future events. Putting people with dementia in circumstances beyond their abilities could trigger a catastrophic reaction. There may be a sudden change in crying or anger.

Health professionals often lack the skills and time needed to recognize, accurately assess, and adequately monitor pain in patients with dementia. You can make a valuable contribution by learning to recognize and assess their pain better than anyone else. Doctors often need to be educated by you. Telling the doctor what you see at home is important.

Don’t try to control or change his/her behavior, you’ll most likely be unsuccessful or be met with resistance. Try to accommodate, not control. For example, if the person insists on sleeping on the floor, place a mattress on the floor. Changing our own behavior will often result in a change in our loved one’s behavior.

5.Target Sensory Connections:

Don’t underestimate the reassurance you can give by holding the person’s hand or putting your arm around them! Sensory connections include hearing (listening to music, white noise, or sounds from nature), touch (massages), or sight (take them to the park). You will find that your loved one seems to relax, and it lessens their agitation.

• Eating:

Caregivers of people with late-stage dementia often provide pureed diets, thickened liquids, and assistance in eating, to prolong their lives, to cause them to gain weight, to reduce the risk of choking, and to make feeding the person easier. The person’s appetite may decline to the point that the person does not want to eat at all.

• Medications:

Currently, there is no cure for Alzheimer’s. Researchers are looking for new treatments to alter the course of the disease and improve the quality of life. Some medicines may delay or keep symptoms from becoming worse for a little while. And in mild-to-moderate Alzheimer’s, medicines also help control some behavioral symptoms. But some caregivers might not want to use drugs prescribed for people in the later stages of Alzheimer’s, believing that the person’s quality of life is already so poor that the medicine is unlikely to make a difference. This may even be the case when the drug has serious side effects.

• Take Care Of  Yourself:

A Perfect Caregiver is a myth (just as there is no such thing as a perfect parent). You have the right to the full range of human emotions, and sometimes you are going to be impatient or frustrated. Learn to forgive your loved one as well as yourself. You might be depressed or fatigued because you feel you are always on call. Add to the list, cutting back on work hours or leaving work altogether. If you feel you need a break, take one and arrange for some temporary help while you are away.

• When someone has moments of lucidity (times when they make perfect sense and can respond appropriately) It is perfectly normal to question the diagnosis when this happens. We often feel like that person has been faking it or that we have been exaggerating. All you can do is treasure those moments.
• Finally, what works today, may not tomorrow:
  The multiple factors that influence the natural progression of the disease process, meaning that solutions that are effective today may need to be modified tomorrow or may no longer work at all. The key is to be flexible and patient.

Written by: Dr. Steffi Andrat FariaMedical Doctor – Physical Medicine & Rehabilitation (MD – PMR), AktivHealth