Caring for an aging parent can be a complicated task. When dementia care is part of the picture, it becomes a lot more difficult. Cognitive and behavioral changes from dementia can occur unpredictably, and parents may resist care.
If you are a caregiver for a senior with dementia, the most important thing is to first understand the disease. Although Alzheimer’s disease is just one type of dementia, it is the one with the most pronounced stages. Alzheimer’s is a progressive condition, meaning symptoms increase in severity as time goes on.
People with Alzheimer’s typically live four to eight years after the disease is confirmed, although some may live with the disease for up to two decades. If you are familiar with these stages it will help you to identify the behaviors your loved one is exhibiting, learn how to address them, and update his or her primary care physician.
Three Major Stages of Alzheimer’s Disease
The brains of people who are later diagnosed with Alzheimer’s begin changing a long time before disease symptoms appear. This is called the preclinical phase of the disease.
The National Institutes on Aging defines the three stages of Alzheimer’s disease as:
- Mild. During the initial phase of Alzheimer’s, your loved one might still live independently. That may include working, driving, and having a full social life. They may begin to increasingly:
- Forget recent events or the names of familiar people
- Have difficulty with numbers
- Lose the ability to plan and organize events
- Have trouble making a grocery list or finding items in the store
- Moderate. Moderate Alzheimer’s tends to last longer than the other stages of the disease. In some cases, people can remain in this stage for several years. Symptoms include:
- Increased memory loss
- Trouble paying bills or following instructions
- Difficulty getting dressed
- Cursing, kicking, or screaming
- Wandering and becoming restless
- Severe. This is the last stage of Alzheimer’s. People in this last stage often show:
- A need care for 24/7 care with all their daily needs
- Trouble walking or sitting up without help
- Difficulty eating or swallowing
- Major changes in the individual’s personality
How to Maintain Quality of Life for a Loved One with Dementia
As the disease progresses, so will the needs of your loved one. You can care for your loved one’s physical needs by closely coordinating care with his or her physician. Just as important is your ability to remain a caregiver for the long-term. Having a strong care team by your side can make this easier.
Create a Safe Home
When a person transitions from the mild stage of dementia to the moderate stage of dementia, you may need to make some changes within the home to reduce fall risk. With a little resourcefulness and a lot of patience, you can provide your loved one with all of the comforts of home, plus an added layer of safety.
Here are some things to consider:
- Assess the situation. Some parts of the home are more likely to present problems for your mom or dad’s safety. Take a close look at the garage, workshop, basement, and yard. Be sure that tools, cleaning supplies, chemicals, etc. are safely stored and out of harm’s way.
- Prevent kitchen fires. You might want to make sure your loved one with dementia can’t turn on the stove when you’re out of the room. Options include installing a concealed gas valve or simply taking off the knobs. You might also install appliances that shut off automatically.
- Emergency contacts. Make sure you have emergency phone numbers and addresses for emergency services handy
- Safety precautions. Regularly check fire extinguishers, smoke detectors, and carbon monoxide detectors to make sure they are working properly.
- Side-step bathroom issues. Think about installing a walk-in tub or shower. Add grab bars inside the show or tub, adjacent to the toilet, and near the vanity. Use safety stickers to make slick surfaces safer.
- Well-lit rooms and walkways. Don’t keep your loved one in the dark. Shine a light on entryways, staircases, doorways, hallways, and bathrooms. A strategically-placed nightlight might prevent a fall.
- Special considerations. Other suggestions include putting away area rugs and installing locks or latches. Some people living with dementia may require the bedroom to be outfitted with a toilet.
2. Do Your Research
Caring for someone with dementia may not come naturally. It isn’t intuitive. Sometimes the logical thing is the wrong thing. For example, if they have developed swallowing or chewing difficulties, insisting that they eat may not help.
Here are a few of the many things to think about:
- Focus on compassion and empathy for your loved one. Don’t try to be perfect.
- Stay realistic. Know that there are ebbs and flows and that the progression of the disease is hard to predict.
- Memory challenges may only be part of the picture. Sometimes, there are personality changes and other psychological symptoms.
- Prepare for changes. With dementia, change is constant. That’s why educating yourself and your loved one is so important. Understanding the symptoms and stages will help you be prepared.
- Educate yourself. A wealth of reading materials, videos, and audio programs are available. While you want to look to your mom or dad’s primary care physician and the rest of the team, YOU are the one who is on-site and on-call, so it’s up to you to educate yourself about the ever-changing nature of dementia.
3. Manage Family Caregiver Stress
When a loved one is in the moderate and severe stages of dementia, it is normal to feel high levels of caregiver stress. You may also need to cope with grief as you approach the loss of a loved one. It might be comforting to compare notes with a social worker experienced in working with caregivers. The social worker can share coping strategies for dealing with the many demands of caring for a loved one.
In the meantime, review these thought-starters:
- Identify the signs of burnout. There are many possible symptoms, but common signals that you may be experiencing burnout include anger and frustration, fatigue, problems sleeping, increased anxiety, and depression.
- Schedule ‘me-time’. The more demanding your caregiving situation is, the more important it is to look after yourself. Burnout can manifest in many ways. Stressed-out caregivers are more prone to errors that might impact your loved one’s health, like missing a dose of medication.
- Take regular breaks. This will help you avoid caregiver burnout due to the often overwhelming demands of caregiving. Simple activities like taking a walk, attending a yoga class, or even settling down with a good book can help.
- Don’t try to do everything on your own. Seek support from family, friends, and outside resources. Don’t just talk about it — get out your calendar and schedule it! (How about now?)
4. Explain Dementia to Your Children
Be honest while explaining dementia to children. Children are very intuitive. They will know that their grandparent, aunt, or uncle are changing and that their behavior is odd. Explain the disease and that loving the family member is most important. Engage them and empower them to be part of the caregiving process. Younger children can read to the loved one, or help you with chores. The family will be less stressed when the situation is discussed out in the open.
You might also wish to share ideas with your kids on how to communicate with your loved one:
- Go with it. If the grandparent says something that doesn’t seem to make sense, tell children to just play along. It’s sort of like playing make-believe.
- Plan ahead. Suggest what to talk about, or choose an activity in advance.
- Use activities. Try a coloring book, listen to music or sing songs together.
5. Schedule Family Meetings
Sit down regularly to talk about how caregiving is impacting the family as a whole. Talk about the impact of the senior’s condition on the family and address stress points and difficulties. Meet with a therapist or case manager if that will help to solve grievances.
Here are a few more ways to hold a successful meeting of the minds:
- Decide who will be part of the caregiving team. This can be informal (for example, you call your brother on an as-needed basis), or formal (as in creating a schedule of who does what, and when).
- Create an agenda for the meeting. Treat it as if it were an important business meeting. Because, after all, it IS as important, if not more important.
- Try to stick to the facts rather than expressing personal opinions. Deciding how to best serve your loved one while riding an emotional rollercoaster is not the optimal way to have an effective planning session. Before the meeting starts, remind the participants to focus on everyone’s number one priority: providing care for your relative.
- Following the meeting, send a summary to all interested parties. This needn’t be formal, but it’s smart to have a written record of the meeting, including the care plan.
6. Lean on Family for Support
Caring for someone with dementia can quickly become the focus of attention for the household. Young children and spouses can feel excluded and left behind. Take time to schedule activities for just the family. A family member or professional caregiver can stay with your loved one and bring special activities so it is a fun evening for him or her as well.
- Create a family calendar. This should include not just appointments, but fun activities centered on togetherness.
- Find a support system. Being the primary caregiver doesn’t mean one has to be the only caregiver. Create a tag team and let other family members get involved.
- Talk things through. Shine a light on the factors that may stress relationships by holding a family meeting.
7. Know When to Ask for Help
Sometimes, even though every fiber of your being tells you that you should be able to handle the demands of caregiving, you don’t have to do it alone. If and when this time arrives, in-home care can be a true blessing for family caregivers. You can also consider respite care, which gives you a little time away for yourself.
In-home care services offer help with the many activities of daily living in the senior’s own home, including:
- Light housekeeping
- Grocery shopping and/or making meals
- Medication reminders
You can relax, knowing that your mother or father will be well cared for while you are away. Respite care services may help you return to your caregiving tasks with renewed energy and enthusiasm.
8. Pay Attention to Your Loved One’s Physical Needs
When caring for people with dementia, most of the attention goes toward a loved one’s changing mental state, especially memory problems. But a loved one may also have changing physical needs that sometimes get missed or mistaken for physical problems from dementia.
Keep an eye out for changes in:
- The ability to dress oneself. This means caregivers should purchase clothes that are easy to wear, and that won’t cause skin irritation.
- The ability to communicate or even speak. Remaining flexible and finding different ways to communicate can make a world of difference.
- Eating and swallowing. Pureed foods can be made to help trouble swallowing.
9. Legal and Financial Needs
In the process of giving your mom or dad the best life possible, don’t forget about a pair of essential items: money and the law. Set aside some time to make sure all of your ducks are in a row. Involve the family and, as much as possible, see that the person living with dementia has a role in decision-making when they are in the disease's early stages.
- Honor your mother or father. Early on, when your relative is still capable of making decisions, it will be easier to make sure their wishes are being honored. As the disease progresses, make sure you are honoring what your parents want, to the best of your ability.
- Create a health care directive. A Health Care Power of Attorney designates a member of the family, or a friend, to make healthcare decisions on behalf of your loved one. It’s urgent to finish this while your loved one is capable of making the choice.
- Craft a financial plan. Decide how money will be managed, and who will manage it. Flesh out the details as much as possible.
- Manage medical matters. Make sure to apply for Social Security, Medicare and (if applicable) VA benefits.
- When in doubt, consult a professional. A family attorney, CPA and investment advisor can all be very helpful.
10. Open Communication is Key
As dementia progresses, you will probably notice changes in the way your mom or dad communicates. In fact, some 50% of the cognitive changes a person with dementia experiences are related to communication.
As a caregiver, part of your job is to learn about those changes. People with dementia may find it increasingly hard to both express themselves, and to comprehend language that was formerly routine.
If and when you notice it’s difficult for your loved one to find the right words, try not to correct them. Instead, work on understanding what they are trying to say by asking simple questions or by using cues such as pointing to a picture and asking if that’s what they mean.
Should your parent seem confused when you answer a simple question, don’t become upset. They are doing the best they can. Instead, explore new ways to express things. For example, try gesturing, showing them pictures, or writing it down.
The Benefits of In-Home Care
Caring for a senior at home takes effort but can bring valuable benefits. Aging in place means your loved one can stay in the home and community they’ve built for themselves. It can also create a sense of comfort and stability. Staying at home also gives seniors a greater sense of independence. In order to reap the benefits, measures must be put in place to make sure your parents stay safe and supported throughout their journey.
As you plan for giving your parent the best possible care and richest possible life experience, don’t forget about all of the outside resources available for you and your loved one. One key resource to consider is in-home care, As noted above, professional in-home caregivers are specially trained to provide Alzheimer’s care. The right home care service can be the key to a successful, long-term commitment to helping someone you love continue enjoying the comforts of home.
Have you found other care strategies that work for you and your family? If so, we would like to hear from you. Senior care is its own special community and by sharing information we can help one another to provide meaningful care.