In the early stages of the disease and depending on the areas of the brain that are affected, people can still have enough self-awareness to make important decisions. That's why it's helpful to work together with your loved one to make an Alzheimer's care plan sooner rather than later.
“Early Alzheimer’s can feel like you have lost control of your life, as well as a loss of independence, particularly if you are unable to drive or work anymore,” says Emerlee Timmerman, MD, UC Health neurologist and assistant professor in the Department of Neurology and Rehabilitation Medicine at the University of Cincinnati College of Medicine. “It is helpful for patients to work with their family and friends to find tasks that they can still do safely.”
Dr. Timmerman recommends the following tips to help ensure your loved one stays safe and lives as well as possible. As a neurologist, professor and specialist in rehabilitative medicine, Dr. Timmerman guides patients and their families through the Alzheimer's care journey.
Understand Your Caring Role
Before you start care planning, determine together what your role will be. Think about your values, your relationship with each other and your strengths when it comes to caretaking tasks.
Keep in mind your level of physical and emotional endurance. What are potential challenges you might face in a caring role?
As your loved one’s care person, your relationship with them should be a partnership — you are a team. While you can improve their quality of life, you are a receiver of the relationship, too, and should benefit from the partnership. This is important to prevent care partner burnout.
Learn What Others Can Offer
Reaching out to others for help is essential. Most care partners have not received prior training to their new role and rely on experiences they’re familiar with, such as parenting. This can lead to inappropriate care and communication. Seeking community resources and support can lead to effective care.
When thinking about who to ask for help, try to seek help from people and organizations your loved one trusts. As you both learn what people and organizations offer, clear communication will go a long way.
Consider developing a list of things that need to be done, then rate what needs to be done by you, is liked to be done by you and then what can be done by others.
As long as your loved one with Alzheimer's is able, give them full say over hiring any professional caregivers. They should have input on any job descriptions and hiring interviews.
Check In on Their Mental Health
Alzheimer's usually feels overwhelming and scary. As your loved one comes to terms with their diagnosis, strive to be there for them emotionally and look for signs of mental health struggles. Use skills like active listening, reflecting and validating their emotions in conversation.
“It is common for patients to develop anxiety and depression as a result of the disease process,” Dr. Timmerman adds. “Medications and counseling are often quite helpful with this.”
Focusing on the activities that soothe the spirit, including music, art and/or prayer may help them cope with the journey ahead. It’s also important to consider activities that they can still help you with, giving them a source of confidence.
When developing their list of activities, Dr. Timmerman says to keep in mind the following:
- Schedule appointments, visits and activities for times of the day when your family member is at their best.
- Avoid new or crowded places.
- Try to determine activities they are still able to help with and/or do mostly independently (with supervision).
Make Key Decisions Together
Make key decisions together now, while the Alzheimer's disease processes are still in their early stages. If your loved one is in denial, lead with compassion and have positive assumptions about their abilities.
When conversing with them, Dr. Timmerman adds that it doesn’t help to argue. Try to move onto something else. Simple words, short sentences and a calm voice are encouraged. Remember, do not baby talk them.
Disorganized spaces can make living with Alzheimer's even more stressful. Help your loved one keep their living space tidy.
This is also the time to get paperwork organized. Help your loved one get their financial, medical and insurance documents in order. Make sure all their coverage is up to date.
Finally, get all legal things organized and in order. Your loved one should have an up-to-date will, end-of-life plan and paperwork appointing a medical power of attorney.
Develop Slow, Comfortable Routines
Routines are an important part of Alzheimer's care. Move through a daily routine slowly and make sure to build in plenty of transition time.
- Encourage using the toilet every few hours.
- Avoid drinks before bedtime.
Getting Ready for the Day: Clothing and Personal Hygiene
- Select clothes that are easy to put on and off.
- Avoid zippers and buttons. Choose wraps or elastic band pants instead.
- Choose a comfortable hairbrush and toothbrush.
- Simplify hygiene routines and reduce transitions. Make sure there are memorable cues for self-care routines, like toothpaste set out in an obvious place on the sink.
- Give small meals throughout the day if they’re not interested in three large ones.
- Make food easier to eat by putting it in a bowl or cutting it up.
- Try to make food taste better by adding spices like sweet and sour flavoring or soy sauce.
- Keep wake and bedtime the same every day.
- Try to avoid naps during the daytime.
- Ensure medications are not causing sleep problems – consult with your doctor.
Other Wellness Tips
- Get enough exercise during the day.
- If possible, engage in mental activity like puzzles, arts and crafts, or gardening.
- Spend time outside and get some sunshine.
Dr. Timmerman notes that sticking to a routine is crucial. Routines can be reinforced with cues like visual reminders, audio cues or alarms.
Establish Safety and Oversight Systems
Incorporating safety systems is one of the most important steps. These are new rules and routines your loved one agrees to, which keep them safe. Ideally, they will propose the specific rules and routines themselves.
- They may need a medication routine or monitoring.
- Develop a system that works for you, with oversight from family/friends early on so that if mistakes happen, they are caught.
- Oversight to ensure not leaving a burner/oven on is an important safety measure to take early on.
- Alzheimer's increases the risk of accidents at home. Establish home safety measures.
- Consider padding sharp corners or investing in a walker, stairlift and other supportive devices.
- Talk to your loved one about getting an ID bracelet or GPS tracker. These can help you find them if they wander off.
- Block unwanted phone calls and emails.
Prepare for Transition to Later Alzheimer’s Care Plan Stages
The early stage of Alzheimer's can last a long time. Then, sometimes, it shifts abruptly. In the earlier stages, practice modes of communication that will serve you both later.
The best communication style for later stages of Alzheimer's is short. Practice precise, concise, to-the-point speech. Speak clearly.
Finally, have plans ready for long-term care. Help your loved one make decisions about nursing home care — or other options — before you reach a stage where they can't communicate.
UC Memory Disorders Center at the UC Gardner Neuroscience Institute
Memory disorders can be confusing, overwhelming and troublesome. At the UC Memory Disorders Center, which is part of the UC Gardner Neuroscience Institute, we understand these challenges and are beside you and your family every step of the way. Our team of subspecialists brings years of training, experience and research to every patient. As an academic health system, we have access to resources for a wide range of memory disorders. You’ll also have easy access to our team for your care support needs.
Call 513-475-8730 for more information or to schedule an appointment.