Dementia is a term used for a group of symptoms that affect a person’s reasoning, memory, and thinking skills. These symptoms can interfere with a person’s daily life. When this happens, the person may require intensive care from a loved one, skilled nurse, or other caregiver.
Dementia is a progressive condition. The underlying damage to the brain that causes the symptoms grows worse over time.
As symptoms worsen, brain functionality declines. Along with communication issues and memory loss, many people with dementia experience changes in both personality and behavior.
These changes can be difficult for family members and close friends. Providing care for someone on an ongoing basis can be hard. Coping with an altered personality and unusual behaviors can be frustrating, difficult, and often very sad.
But with preparation and planning, you can better handle the changes, progression, and setbacks common in caring for someone with dementia.
There are many changes that may take place along this care journey. If you’re a caregiver for a loved one with dementia, it’s important to know the kinds of things that could happen. No person’s experience with dementia is the same as another person’s, but the more you know about the condition, the better.
One of the biggest changes you’re likely to experience is in communicating with your loved one. Practical strategies for better communication include:
- Not making assumptions. The progression for dementia is different for everyone. Don’t assume that your loved one’s ability to communicate has changed because of their dementia.
- Involving them in important discussions. Depending on the illness’s progression, it’s possible for people with dementia to understand their choices and to state their preferences and opinions.
- Practicing patience. As the symptoms of dementia progress, your ability to communicate with your loved one will change. Be as flexible as you can, even if — or when — it tests your patience.
- Limiting distractions. If you need to have a clear conversation with your loved one, limit distractions, such as the TV, tablet, or phone, which can lead to miscommunication.
- Having a positive attitude. You don’t have to be a constant “cheerleader,” but the way you respond can set the tone for interactions. If you can, try to be pleasant, respectful, and optimistic in conversations.
- Keeping it simple. Use clear words, sentences, and questions. Ask one question at a time, waiting for feedback or replies. If their reply is delayed, give them time, and try again.
- Listening. Take time to listen to what your loved one has to say. Validate any concerns or fears. Dismissing them or rushing through a conversation may make them frustrated, as well as emotional.
- Laughing. Humor can help nearly any situation, and though your loved one’s memory and thinking may be changing, don’t assume they’ve lost their sense of humor too. Share in a laugh if you can.
Dementia is commonly associated with memory loss. But there’s another change that’s equally disruptive to everyday living: behavioral changes. It’s not uncommon for dementia to alter a person’s personality and behavior.
Keep in mind that you may not be able to stop changes in a person’s behavior, but you can work on being flexible, understanding, and patient in how you respond.
Dementia-associated behaviors vary, but some common ones include poor personal hygiene, wandering, and agitation or “dementia outbursts.”
Here are some ways you can manage these difficult behaviors:
- Accommodate. You don’t have much ability to control the behavior, so instead try to find ways to be flexible with care and communication as they occur.
- Talk with the doctor. Underlying medical issues may be the reason for certain behaviors — not just dementia-related changes. If your loved one complains of pain and acts out in bursts because of it, talk with their doctor.
- Look for triggers. Are certain behaviors more common at specific times of the day? For example, if getting dressed or brushing teeth sets off a highly charged reaction, see if you can change how you approach the task.
- Be flexible. You may feel relieved after finding a way to manage a specific behavior, but don’t be surprised if yesterday’s solution doesn’t work today. Do your best to be creative, flexible, and yes, patient.
When the loved one with dementia is your parent, it can be especially challenging. The person who once cared for your every need now needs you to do the same for them.
If you are facing a dementia diagnosis with a parent, know that you’re not alone. There are things you can do to help cope with this new reality.
Read and research
While it may seem quite simple, education can help you during this time. Learning about the condition, the possible symptoms, and any current medical advancements, may prove useful as you care for your parent. It may also help you take care of yourself during this difficult period.
The role of caregiver for a person with increasing needs can be challenging and often overwhelming. Find support with local memory-care groups or other support groups for dementia caregivers. Hospitals and community organizations frequently organize these groups, host speakers, and offer trainings and teachings specific to your needs.
Ask for help
If you can, lean on those around you. If a close friend or spouse is able to spend time with your parent occasionally, it will give you a chance to take a break and charge your batteries.
Many people with dementia find a change in faces and conversation uplifting.
While dementia often impacts a person’s short-term memory, it’s likely your parent will recall things from years ago.
Be open to revisiting past events, especially if your parent shows interest in something that happened long ago. Not only will it help foster a connection, but you might find it nice to laugh together again.
Support for caregivers of people with dementia can take several forms. What’s right for you may change over time, and you may seek out several of these options for their different levels of care.
Traditional support groups
Local hospitals or chapters of memory care organizations, such as the Alzheimer’s Association and Family Caregiver Alliance, may provide in-person meetings weekly or monthly for caregivers. These support groups typically provide emotional support for caregivers while educating, too.
Online support groups
Prefer a virtual meetup? There are a number of digital support groups, including ALZConnected and Family Caregiver Alliance.
Seek social support
Some caregivers find support in Facebook groups, which seek to give caretakers a safe place to share how they feel and what they’re going through.
One group Memory People, encourages members to ask questions and invites other members to answer. Looking for guidance on planning and preparation? This group may be able to offer advice.
Not all support looks the same. If you find that you need a break from talking about your situation, try doing something for yourself.
What will help you feel refreshed and ready to take on another day of caregiving? Maybe it’s a daily meditation or journaling practice. Or maybe you just need an afternoon to watch your favorite movies or read a novel.
Create a plan
While dementia’s exact progression is different for every person, there are still things you can do to be ready as symptoms worsen.
Consider making a plan for how you’ll respond to certain behavior changes, like outbursts or inappropriate actions.
You might also plan for how you’d handle the need for more serious care. What will you do if or when you need help? Have you visited an area memory-care center or assisted-living facility? Have you talked with other family members about long-term care as the condition worsens? And do you need to look into financial assistance, if that’s a concern?
Though these are hard things to think about, they may be easier to work through now, before the dementia progresses and your role as caregiver becomes even more challenging.
Dementia is a group of symptoms that impact a person’s memory and thinking skills. As a loved one’s dementia worsens, you may need to step in as a care provider. While this can be a challenging role, there are several important steps you can take to better prepare yourself for both the day-to-day demands as well as future changes.
And while you may be providing for your loved one’s needs, it’s vital that you seek out and accept help from others as well. This includes in-person care from friends and family members, as well as social connection and support from classic support groups or community networks.