Caring for an aging parent is a complex 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 Phases 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 (early stage): During the initial phase of Alzheimer’s, your loved one might still live independently. That may include working, driving and participating in a social life. But the person might sense that something is different. They may
- 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 (middle stage): Moderate Alzheimer’s tends to last longer than the other stages of the disease. In some cases, people can remain in this stage for a number of years. Symptoms include:
- Increased memory loss
- Trouble paying bills or following instructions
- Difficulty getting dressed
- Cursing, kicking, or screaming
- Wandering and becoming restless
- Severe (late stage): 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 to walking or sitting up without help
- Trouble eating or swallowing
- Major changes in the individual’s personality
Dementia Care at Home: A Step-by-Step Care Plan to Maintain Quality of Life
As the disease progresses, so will the needs of your loved one. You can care for the physical needs of your loved one 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.
1. Making a home safer.
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 catastrophes. 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. Scan kitchen countertops and tables for items like decorative fruits and bottles of seasoning. It’s best to remove these items.
- Safety by the numbers. Make sure you have emergency phone numbers and addresses for emergency services handy.
- Extinguish emergency situations. Regularly check fire extinguishers, smoke detectors, and carbon monoxide detectors to make sure they are working properly.
- Side-step bathroom issues. Think about the merits of 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 more safe.
- 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 stop an accident before it starts.
- 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. In fact, 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. Learn about the disease and its treatment and consult with your loved one’s physician and ask their advice for caregiving.
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.
- Perform a reality check. 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 mental symptoms.
- Be ready to face the future. With dementia, the only constant is change.
3. Find resources for coping with 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:
- Schedule ‘me-time’. The more demanding your caregiving situation is, the more important it is to look after yourself.
- Take regular breaks. This will help you to avoid caregiver burnout due to the often overwhelming demands of caregiving.
- Don’t try to do everything on your own. Seek support from family, friends, and outside resources.
4. Talk with your family and children about caregiving.
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 senior family member is most important. Engage them and empower them to be part of the caregiving process. Younger children can read to the senior, 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. Have regular family meetings.
Sit down on a regular basis 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
- Create an agenda for the meeting
- Try to stick to the facts rather than expressing personal opinions
- Following the meeting, send a summary to all interested parties
6. Spend time with your partner and children.
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 it’s time to bring in outside 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.
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 also consider respite care, which gives you a little time away for yourself.
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 changing 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 dementia patients also have changing physical needs that sometimes get missed or mistaken for behavioral 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 a blessing should this occur.
The Rewards 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.
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.