Caring for a loved one with dementia at home can be incredibly challenging, but it can also be one of the most meaningful experiences. It requires patience, understanding, and a willingness to adapt to the changing needs of your loved one in order to give them the best quality of life. In this blog, we'll explore ten practical ways to support a person with dementia at home, and ultimately help you navigate this difficult time.
Educate Yourself About Dementia and Its Treatments
One of the first steps to take that can help you navigate this stage of life is learning more about your loved ones' diagnosis. Understanding dementia can help you provide better care. When a family member is diagnosed with dementia, it's normal to feel overwhelmed, especially if you don't know much about the condition.
Start by learning about the specific type of dementia your loved one has, as well as dementia in general. Even though dementia affects everyone differently, understanding the disease will help you prepare for future challenges.
All types of dementia lead to cognitive decline, memory loss, and communication difficulties. However, there are differences between types, like Alzheimer’s disease or alcohol-induced dementia, so try to learn as much as you can about your loved one's specific condition.
Knowing more about dementia can help you set expectations and plan for the future. But keep in mind that symptoms can change daily, so take it one day at a time.
Manage Caregiver Stress
Caring for a loved one at home with dementia can be emotionally and physically demanding, leading to high levels of stress. Caregivers of elderly family members often feel torn between their responsibilities. Around 36% of caregivers, aged between 50 and 64, belong to the so-called Sandwich Generation, juggling the needs of both their parents and their adult children and grandchildren. Additionally, the financial burden is significant, with families spending an average of $7,242 annually on caregiving expenses. Many caregivers find that joining a support group or seeking counseling can help them cope with the challenges of caregiving.
Support groups for caregivers of individuals with dementia are available for family members and friends, including parents, grandparents, and other caregivers. Some groups focus on specific aspects of dementia care, while others address broader issues related to dementia. These support groups can be held in person, online, or through chat-based services.
Seek Support from Family, Friends, and Caregivers
Even if you usually feel confident in your caregiving, looking after a person with dementia is challenging. You might sometimes feel lonely, exhausted, and overwhelmed. Remember, you’re not alone—many others are experiencing the same struggles.
Don't hesitate to ask for help and support from your network of family and friends. There are also numerous support groups and charities available nationwide to assist you during difficult times and provide a much-needed break.
It's important not to wait until you're in crisis before seeking help. Taking care of yourself is essential to being able to care for someone else. Consider exploring options like respite care as well.
Hold Regular Family Meetings
Communication is key when caring for a loved one with dementia. Regular family meetings can help ensure that everyone is on the same page and can contribute to the caregiving process. These meetings can also provide an opportunity to discuss any changes in your loved one's condition and adjust the care plan accordingly.
Utilize Available Resources
There are numerous resources available to support caregivers of people with dementia, including support groups, respite care services, and educational materials. Effective resources for individuals with dementia don't need to be costly or complex; even simple, everyday items can significantly enhance their quality of life at home. For instance, The US Centers for Medicare & Medicaid Services (CMS) recently introduced a new nationwide test model, the Guiding an Improved Dementia Experience (GUIDE) Model. This voluntary program aims to assist individuals living with dementia and their unpaid caregivers. The model focuses on dementia-care management to enhance the quality of life for those with dementia. It will provide care coordination and management for individuals with dementia, as well as education, support, and respite services for their caregivers. The GUIDE Model is set to launch on July 1, 2024.
With the introduction of CMS's GUIDE program, leveraging resources has never been easier. This new program helps those living with dementia with Medicare or Medicare + Medicaid coverage get care coordination. This means that someone like a Tembo Health navigator will help you and your loved one identify the services you need and even help you get appointments with the right clinicians and vendors.
Prevent Wandering Behavior
Wandering is a common and complex behavior in dementia patients. About 20% of individuals with dementia living in the community and 60% of those in institutional settings are known to wander. Wandering typically includes various dementia-related movement behaviors, such as trying to escape, repetitive pacing, and getting lost.
Here are some tips that may help reduce the risk of wandering and provide peace of mind for caregivers and family members, though they cannot guarantee that a person with dementia won't wander:
- Identify the time of day when wandering is most likely, such as early evening for those experiencing "sundowning." Plan activities and exercise during this time to help reduce anxiety, agitation, and restlessness.
- Ensure all basic needs are met, including toileting, nutrition, and hydration. Consider reducing— but not eliminating— liquids up to two hours before bedtime to minimize nighttime bathroom trips.
- If the person is no longer driving, remove access to car keys, as they might attempt to wander by car, not just on foot.
- Avoid busy places that can be confusing and cause disorientation, such as shopping malls.
- Assess how the person responds to new surroundings. Do not leave someone with dementia unsupervised in new environments that may cause confusion, disorientation, or agitation.
Reduce Fall Risk in Your Home
According to the Alzheimer's Association, falls are a significant concern for individuals with dementia, with one in three seniors experiencing a fall each year. Simple modifications, such as removing tripping hazards and installing handrails, can greatly reduce this risk. For example, installing grab bars in your mother’s bathroom to prevent slipping upon exiting the shower, providing added safety and peace of mind.
Prepare for Advanced Stages of Dementia
Dementia is a progressive disease, and your loved one's care needs will change over time. Planning for the later stages of dementia, such as discussing advanced care options and making legal and financial arrangements, can help ensure that your loved one receives the care they need as their condition progresses.
Although it may be difficult, it’s best to create a long-term plan early on. This way, your loved one can be involved and express their wishes for the future.
Planning ahead reduces the stress of making sudden decisions and clarifies who will be responsible for these choices. This includes decisions about care options, legal and financial arrangements, and other personal goals.
For instance, your loved one might prefer to spend their final days at home with family and friends instead of in a care facility. Planning early ensures that their wishes are respected and prevents you from having to make difficult decisions on their behalf.
Slow Symptom Progression
While there is no cure for dementia, certain lifestyle changes can help slow the progression of symptoms. The progression of dementia varies based on factors like the person's age at diagnosis and the type of dementia they have. However, it often follows three stages. In the early stage, individuals experience mild symptoms such as confusion and misplacing items but remain largely independent. In the middle stage, they may need help with daily tasks like eating and bathing, and noticeable behavioral and personality changes occur.
In the late stage, symptoms become severe. People typically require full-time care and may struggle with basic physical and cognitive tasks like walking, swallowing, and speaking.
As individuals progress through the stages of dementia, their cognitive and physical abilities gradually diminish.
Look out for the following signs and symptoms:
- Wandering, getting lost, or disorientation
- Difficulty communicating
- Memory loss and increased forgetfulness
- Trouble recognizing familiar places and people
- Heightened agitation, aggression, or restlessness
- Difficulty walking, eating, or controlling bowel movements
Consider In-Home Caregiver Services
As your loved one's care needs increase, you may want to consider hiring an in-home caregiver. An in-home caregiver can provide professional care and assistance with daily tasks, giving you peace of mind knowing that your loved one is well cared for.
Conclusion
Caring for a person with dementia at home is a challenging but rewarding experience. By implementing these ten strategies, you can create a supportive and nurturing environment that helps your loved one live a fulfilling life at home. Remember, you are not alone in this journey. There are many resources and support networks available to help you navigate the challenges of dementia caregiving. For more information and assistance, visit Tembo Health to learn how their specialized dementia treatment services can support you and your loved one.
By providing these practical strategies and support, you can make a positive impact on the life of your loved one with dementia, helping them live as independently and comfortably as possible at home.