According to the World Health Organization (WHO), more than 47 million people in the world are currently living with dementia and that number is expected to triple over the next three decades. Alzheimer's disease is the most prevalent form of dementia, affecting 5 million individuals in the United States alone. That number is projected to rise to 16 million by 2050. In fact, the Alzheimer's Association claims that 1 in 3 seniors will die with Alzheimer's or another form of dementia.
Though dementia is a horrible disease that robs individuals of their mental faculties and even their personality, it is not just the patients who are affected. There are an estimated 15 million Americans who provide more than 18 billion hours of unpaid care for loved ones suffering from dementia each year. In many cases, caring for someone with dementia becomes a full-time job and as many as 35% of those caregivers admit that the burden of care has affected their own health.
Providing care for Alzheimer's or other forms of dementia is a noble calling, but it is by no means easy. If you find yourself in this position, learning effective strategies for communication and care can make your job a lot easier.
Related: Signs It Might Be Time for Memory Care
Tips for Effective Communication
As your loved one progresses through the stages of dementia, their ability to communicate clearly is going to decline; however, keeping the lines of communication open for as long as possible is important for their mental well-being. It is up to you to learn how to communicate effectively throughout the different stages of progression.
Here are some tips for communicating with someone suffering from dementia:
- Eliminate as many distractions as possible. This means turning off the radio or television, drawing the blinds, and shutting the door, if necessary, so your loved one can focus.
- Make sure they are listening. Before you begin talking, make sure you have your loved one's attention. Address them by name, identify yourself if necessary, and use physical contact to keep them focused.
- Maintain a positive attitude and body language. Although your loved one may have experienced some cognitive decline, they will still pick up on nonverbal cues. Try to keep your body language open, your voice upbeat, and your mood positive.
- Speak slowly and clearly. Just because your loved one has trouble communicating doesn't mean that you need to dumb things down – this may only cause more frustration. Instead, make sure you are speaking slowly and clearly, repeating things if necessary.
- Spend as much time listening as speaking. Make sure that you are having a two-way conversation – this may require you to wait patiently while your loved one formulates their response, and you may need to ask for a repetition if it is hard to understand. It is important to not give up or get frustrated.
- Use distraction if necessary. As you communicate with your loved one, there may come a point when they cannot remember certain words, or they lose track of their thoughts. This can be frustrating and may cause them to become agitated. The best thing you can do in this instance is to acknowledge their feelings and offer a distraction to avoid further distress.
In the early to middle stages of dementia, your loved one will have some degree of awareness that their mental ability is in decline. This can be an incredibly frustrating and scary realization, which is why it is so important for you to be patient and understanding in the moments when they are really struggling to communicate. Just be patient, ask questions, and make sure to listen intently.
Keeping Your Loved One Safe at Home
In the early stages of Alzheimer's or dementia, your loved one may still be able to care for themselves, albeit with a little help. As the disease progresses, they may struggle with daily activities such as preparing meals, bathing, and getting dressed; they may forget how to safely use the stove, or may draw a bath and leave the water running. Part of your job as a caregiver is to make adaptations in the home to ensure safety.
Here are some simple steps to take:
- Start by taking an objective look around the house to identify potential danger zones, such as the garage, storage room, or basement, and install new locks or other safety devices where needed.
- Remove the knobs or install a hidden gas valve so your loved one cannot use the stove without supervision – you may need to make adaptations to the sink and tub, as well.
- Check and double check safety devices such as smoke detectors, fire extinguishers, and carbon monoxide detectors.
- Install extra locks or deadbolts to keep your loved one from wandering outside – make sure the locks are hidden or out of reach.
- Add extra lighting to keep stairwells, hallways, bathrooms, and doorways well-lit to prevent accidents.
- Put medications and cleaning products in a locked drawer or cabinet – if your loved one can still be trusted with medication, make sure they have a pill organizer that you refill for them.
- Install safety measures in the bathroom, such as grab bars and non-slip mats. Avoid using rugs that might slip out of place.
As much as you try to keep your loved one safe, you cannot plan for every possibility and you cannot provide supervision 24 hours a day. When you start to become concerned for their safety at home, you might consider installing a monitoring device. These come in many different forms and they can give you peace of mind knowing that help will be provided in an emergency.
How to Handle Difficult Behaviors
As your loved one's dementia continues to progress, they will go through troubling behavioral changes, as well as mental and physical changes. It is common for those with dementia to wander, often without realizing what they are doing and without having any true destination in mind. One thing you can do to help reduce this behavior is take your loved one for short walks to minimize restlessness. You may also need to install new locks on the door or create physical barriers to prevent them from leaving the house without your knowledge.
Another challenge you may find yourself dealing with is changes to personality. Your loved one may become agitated or combative at times, even to the point of physical aggression. What you need to remember is that they have no control over their behavior at this point – they do not mean to hurt you. You also need to realize that these behaviors typically have a trigger – various environmental factors, as well as fear or confusion can cause acting out in unpredictable ways. If you can identify the trigger, you may be able to soothe them and prevent a recurrence.
Over time, cognitive ability and awareness will decline to the point that your loved one does not react to anything or communicate in any way. Before reaching that final stage, however, they may develop paranoia or repetitive speech or actions, and behavior may worsen at the end of each day. This is known as "sundowning." The best thing you can do is remain patient and try to identify and understand the triggers and underlying factors that may be contributing to these actions. You may also need to develop tactics for distracting your loved one if they become extremely agitated or fixated on something.
Is It Time to Seek Professional Help?
From the moment dementia begins to develop to the point at which your loved one requires full-time care, it could be a full 10 years or more. That is a long time to spend putting someone else's needs before your own and the job only gets more difficult as time goes on. At a certain point, you are going to have to ask yourself the difficult question – is it time to seek professional help?
Round-the-clock in-home care for Alzheimer's patients is expensive, but it does have its benefits. Your loved one may be more comfortable in their own home and that might mitigate some of the other challenges they experience as their dementia progresses. If in-home care is not an option, or if the dementia has already passed the point of retaining any awareness of surroundings, moving them into a care facility may be a better choice.
Caring for a loved one suffering from dementia is exhausting, both physically and mentally. In addition to cultivating an attitude of patience, you need to remember one thing – your loved one has no control over what is happening to them. While you can empathize with them and offer love and support, you need to remain realistic about what is and is not possible.
You should also be prepared for the eventuality that your loved one's needs will eclipse your caregiving abilities. It can be difficult to admit that you are no longer able to give them what they need, but if you truly care about them, you will make the choice that is in their best interest at that point in time.
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