Dementia is a general term used when someone starts to lose their ability to carry out activities of daily living and has a loss of memory or problems in other areas of thinking. Wandering and getting lost, needing help with activities of daily living, and eventually not knowing who loved ones are, are common challenges care partners may face. Taking care of someone with dementia is a hard task, which means avoiding burnout is a top priority. In fact, this burden can be just as severe for the care partner as the person with the disease. Some days may be full of helplessness and fear, while others might carry joy and hope. It can be helpful for care partners to learn more about dementia, gain strategies for overcoming challenges, and remember to make time for themselves.
There are many causes of dementia, and the symptoms are different for each person. Some common thinking difficulties from dementia include trouble making new memories, problems with judgment and decision making, and declines in language. Other symptoms include changes in personality, behavior, mood, appetite, sleep, and hygiene. As a result of this wide range of symptoms, every care partner faces unique challenges. It can be difficult to accept that there is currently no cure for dementia. However, it is important to know that there is a lot that can be done to help. Here are some general tips for those caring for a person with dementia.
Being creative and keeping an open mind are key for overcoming difficult or unexpected situations. Someone with dementia might become easily confused or upset, and it is important to minimize these cases. Avoid arguments and questions that need memory for details. Stay calm and speak in short, simple sentences to reduce frustration and confusion. Keep a structured daily routine with times for sleep, meals, and other activities. This may help engage loved ones who are withdrawn. Including activities your loved one enjoys into the schedule can also help.
People with dementia may have trouble understanding their own symptoms or their consequences. This lack of understanding can cause more problems for patients and their loved ones. It is easy for people with dementia to become confused or upset, but care partners can reduce these symptoms by noticing what is making their loved one uncomfortable. Calming them and going on to something else may help keep them from getting more upset. This can be easy to forget when an affected loved one says or does something that is out of place or unlike them. It may help care partners to keep in mind that their loved ones may not be able to reason like, or do things as purposely as they did in the past. This can lead to more realistic goals for both the care partner and the affected person. Here are more ways to improve communication with loved ones with dementia:
- Speak slowly and provide more time for replies.
- Insert breaks in activities before they are needed.
- Encourage independence for timed activities by setting reminder alarms.
- Give them safe tasks to do that encourage sharing in household activities.
- Use whiteboards to relay important information like upcoming appointments.
- Place calendars in common areas and mark off each day together.
- Avoid emotional situations after a long day.
Planning for the Future
The rate of decline for people with dementia is different depending on the type of dementia, age of onset, and person. Some things that help slow decline are exercise, healthy diet, good sleep, low stress, and social activity. Because the rate of decline for any one person is hard to know, it is best to plan for the future early while the person with dementia can still have a say. Contact with social workers or other healthcare professionals is a good starting point to begin this planning. Establishing advanced health care directives and a durable power of attorney are a good idea. In some cases, a legal guardian will need to be chosen. Click here to go to the National Institute on Aging’s website on legal and financial planning for people with dementia. Planning for a future higher level of care (e.g., professional in-home aides, assisted living facility) is also important. These services are usually expensive, the quality varies widely, and there is often a wait. Looking at these options early can help to get the best one. Safety also becomes a bigger concern as dementia goes along. Consider the following hints to help safety-proof your home before it becomes necessary:
- Install grab bars in bathrooms and kitchens.
- Place night lights near bedrooms and bathrooms.
- Install bells on doors and/or use a wearable GPS device to keep the loved one wandering.
- Take off locks from bedrooms and bathrooms and keep outside doors locked.
- Clear walking paths by moving furniture and keeping small items off the ground.
- Put away dangerous objects such as cleaning supplies or medications that they could eat or drink.
Dementia can be just as hard on the care partner as the person with dementia, so self-care is just as important as caring for your loved one. Having people you can count on is important because no person can care for a loved one with dementia alone. As a care partner, reach out to friends, family, and community for help. Often folks want to help, but they simply do not know who to ask or where to start. Do not be afraid to ask for specific types of help, such as requesting that a friend come over once a week to help cook a meal or do a little housework. Hired in-home professionals can do everything from cooking and cleaning to giving medications and bathing. Local communities can provide many different types of help and some organizations offer activities for people with dementia or support groups for care partners. Adult day programs provide supervised care that builds in free time for care partners while also offering activities for affected loved ones.
Here are some resources for care partners of people with dementia:
- For information and resources on all types of dementia, look up your local Alzheimer’s Association chapter at www.alz.org or call their 24/7 helpline at 1-800-272-3900.
- Connect with your local Area Agency on Aging to learn what they can do to help at https://www.n4a.org/about