Do you know someone who could use dementia caregiver support? Is your family in need of resources for caring for a loved one with dementia? We’ve found several ways for you to offer and receive help!
What is dementia?
Dementia is a general term that may cover several diagnoses related to symptoms caused by abnormal brain changes. Often these symptoms include changes in thinking skills, behavior, and emotional responses to the extent that they impair daily life functions and someone’s ability to live independently.
Dementia covers a wide range of these brain changes with the most common being Alzheimer’s. Other diseases and conditions that qualify as dementia are: Parkinson’s, Huntington’s, Vascular Dementia, Lewy Body Dementia, and more.
Statistics from 2020 estimate that over 55 million people worldwide are living with dementia. This makes dementia caregiver support all the more important!
Is dementia curable?
Dementia is usually progressive, since areas of the brain are changed and damaged. Many medical professionals approach treating the symptoms that may appear. Some medications may be able to help improve memory. Other therapies can reduce restlessness or depression. Early stage dementia may be treated with Cholinesterase inhibitors. It’s a big name for something that essentially helps reduce the breakdown of a substance that allows your brain to pass messages. This can help slow memory loss for your loved one.
How can dementia caregivers support their loved ones?
Ways that dementia caregivers support their loved one can change through the early, middle, and late stage as dementia progresses.
Early stage
At the early stage of dementia, many people continue to function independently and just need support and companionship to help them continue to participate in daily activities. Encouraging your loved one to continue to be involved in social activities and to be proactive about potential treatments can be a vital way that dementia caregivers support early stage patients. Participation in clinical trials may possibly alleviate some symptoms and extend quality of life. Many dementia patients may stay in the early stages for years.
Many early-stage dementia patients may live alone during this time. If this is the case, calling and visiting and checking in often may help ensure they are safe and have the support they need.
Practical ways that dementia caregivers support their loved ones can include:
- Creating a support system network of family, friends, neighbors, and more
- Ensuring their home and surroundings are as safe as possible
- Minimizing stressful activities and delegating stressful tasks to others
- Communicating with the patient about how much assistance they are comfortable receiving
- Assisting with tasks that require organization and coordination (grocery shopping, medications, etc).
- Performing housekeeping tasks and daily chores
- Encouraging physical activities and quality sleep
- Preparing healthy meals
The early stage is also a good time to help make long-term decisions. These conversations can be difficult, but are necessary to help dementia caregivers support their loved ones’ wishes. These plans may evolve and change over time, but having a framework and open communication may help the support team stay on track with preferred care decisions.
These decisions may include planning for:
- legal
- financial
- long-term care
- relationships
Middle stage
The middle stage of dementia is often the longest and can also last for years. That is why caregivers are so vital to helping monitor and identify ways that additional care and support may be needed.
This stage may be especially challenging because many emotional and behavior changes often happen. Common symptoms may include confusion, refusals to do common daily activities (eating, bathing, taking medications, etc), physical and verbal outbursts, sleep changes, and wandering. Communication may also become more difficult, leading to frustration.
Practical ways dementia caregivers support middle stage loved ones with dementia:
- Help arrange transportation when it is no longer safe for them to drive
- Arrange for someone to be with them for assistance and safety
- Assist with hygiene and health tasks
- Adjust daily activities to the extent of their ability
- Try new activities and creative outlets that they may enjoy
- Possibly arrange for a care facility if they cannot have adequate assistance at home
Persons with dementia may ask the same questions repeatedly or become confused and agitated. Another way dementia caregivers support them is to answer questions calmly and encourage communication.
Late stage
Late stage dementia patients typically need full-time assistance with personal care. They will also usually have difficulty eating, swallowing, and walking. This often means that facility care can offer the best fit for this stage. This is where conversations from earlier about long-term care or hospice are helpful in moving forward with your loved one’s wishes.
Oftentimes sleep issues can be significant in late stage dementia. Exhaustion and possible misinterpretation of shadows can contribute to confusion and hallucinations. Coping strategies may include: limiting daytime naps, increased lighting in the home to minimize shadows, daily schedule to relax in the evening, and calm intervention or distraction if someone becomes agitated.
Practical ways dementia caregivers support late stage patients:
- Enjoying favorites foods, music, books, or photos
- Monitoring fluid/food intake
- Adapting meals for swallowing challenges or supplemental needs
- Assist with toilet needs and use bedside commodes and adult briefs if needed
- Adjust position frequently to improve circulation and relieve pressure
- Prevent and treat for skin irritations
- Perform range-of-motion exercises by carefully moving limbs
- Assist with brushing teeth and caring for daily hygiene needs
- Monitor signs of pain and report to medical team
Now let’s talk about you!
These stages can seem like a lot to process and they can be emotionally and physically draining if one person shoulders it all. One of the best things you can do for yourself and your loved one is to create a network to share tasks as a team! Dementia caregivers support can be as small as scheduling something enjoyable for yourself once per month. It can also be as small as taking daily breaks to take a few deep breaths and refocus. These times of self-care can be important to keep yourself physically and emotionally recharged.
Resources that are available for dementia caregivers support:
- In-home assistance programs for housekeeping and medical care
- Meal preparation or delivery services
- Adult daycare services
- Respite care – short term care for your loved one
- Scheduling blocks of times for other family members or friends to provide care and companionship
- Delegating tasks to others in the support network – accept help when offered!
- Wander prevention systems to alert when your loved one is not within a predetermined space
- Counseling for processing emotions due to a loved one’s health changes
- Hospice care to handle the daily physical assistance tasks
The Alzheimer’s Association also provides links to local and online support groups. Their resources extend to message boards where dementia caregivers support each other and may ask questions or provide input anonymously.
We’ve covered many ways that dementia caregivers support their loved ones, and also many ways for them to receive support themselves. We’re happy to provide more healthcare resources!
Rachel Grayless
After 27 years in law enforcement and state Veterans Affairs agencies, I found myself working from home and looking for dollar-stretching resources. Government programs can be notoriously difficult to navigate and I'm happy to lend my experiences to make this easier for others!