Caring for an aging parent is a complex task. When dementia care is part of the picture, it becomes exponentially 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, though 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 social life. But the person might sense that something is different. Alzheimer’s disease commonly begins with memory loss and small changes in personality like:
- Forgetting recent events or the names of familiar people
- Difficulty with numbers
- Losing the ability to plan and organize events
- Having 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. While some people can still recall many of life’s key events and details, moderate Alzheimer’s is characterized by:
- Increased memory loss
- Trouble paying bills or following instructions
- Difficulty getting dressed
- Cursing, kicking, or screaming
- Wandering and become restless
Severe (late stage): This is the last stage of Alzheimer’s and generally includes:
- A need for 24/7 care with all their daily needs
- Inability to walk or sit up without help
- Trouble eating or swallowing
- Major changes in the individual’s personality
Dementia Care at Home: A Care Plan to Maintain Quality of Life
As a person with Alzheimer’s changes, the caregiver must change too. You can care for the physical needs of your loved one by closely coordinating care with his or her physician. Having a strong care team by your side can make this easier. Also having a clear understanding of your role as a caregiver and strategies designed to protect the wellbeing of you and your family can help, such as the following:
1. Caregiving demands will increase over time.
As the disease progresses so will the needs of your loved one. For example, when a person transitions from the mild stage of dementia to moderate dementia, you may need to make some changes within the home to reduce fall risk. Suggestions include putting away area rugs and installing safety devices such as locks or latches. Some patients may require the bedroom to be outfitted with a toilet.
At some point, caregiving becomes a full-time job. Knowing this will help you to plan your work/life schedule in a realistic manner, so ask for help with caregiving responsibilities.
2. Dementia caregiving requires special skills.
Caring for someone with dementia may not come naturally. It isn’t intuitive. In fact, sometimes the logical thing to do is the wrong thing. For example, if they have developed swallowing or chewing difficulties, insisting that they eat may be the wrong thing to do to help. Learn about the disease, its treatment and consult with your loved one’s physician to ask their advice for caregiving.
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. They can share coping strategies for dealing with the often-unending demands of caring for a loved one.
3. Talk with your children about caregiving.
Be honest. 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 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.
4. Have regular family meetings.
Sit down on a regular basis to talk with siblings or extended family members involved in the care plan 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.
5. Spend time with your partner and children.
Caring for someone with dementia can quickly be the focus of attention for the household. Young children and spouses can feel excluded and left behind. Take time to schedule activities just for 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.
6. 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, those demands may become unbearable. 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 seniors 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.
7. Consider care outside the home.
There are other dementia care options for you and your loved one. Here are two popular approaches:
- Adult day centers. These can be a win-win for people with dementia and their family caregivers. Your parent has the chance for social interaction in a caring setting and you get a well-deserved break.
- Residential care communities. This may not be your preference, but it’s good to know this option is there if and when the time comes. Gone are the days of impersonal “old folks homes.” Today’s residential facilities provide an assortment of care levels, which can be adjusted to your parent’s requirements.
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 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 the journey.
Have you found other 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.