Can My Loved One Live at Home with Dementia? A Comprehensive Guide to Planning for In-home Dementia Care

Did you know that of the 5.8 million Americans with dementia, most actually remain in their homes with the support of a caregiver?¹ For many families, keeping their loved one at home while they receive dementia care is a personal preference because it’s a familiar setting and can be more comfortable than facility-based care. For others, the choice is based on affordability, as in-home care can often be less expensive, depending on the level of support and hours of care needed.

Regardless of your situation, receiving a dementia diagnosis and navigating dementia care for a loved one can feel overwhelming. At HomeWell, we understand the emotional toll that the discovery and initial treatment of this condition can take on your loved one and your family. But don’t lose heart—we’ve created this guide to help you understand what to expect, the type of care they’ll need at each stage, and how to adjust as their needs change over time.

Understand dementia and its warning signs

Before anything else, it’s important to educate yourself about the condition. Occasional forgetfulness is a normal part of aging, so it’s important to learn the key signs of dementia and to seek out a diagnosis from your loved one’s doctor to distinguish between the two. By learning to recognize dementia and its stages, you can better understand what your loved one may be going through and how you can help.

The term “dementia” encompasses a range of neurological conditions that affect a person’s cognitive function, increasingly limiting their capabilities and affecting their life span.There are a few different types of dementia, although the most common is Alzheimer’s disease, which accounts for up to 80% of cases.²

With any type of dementia, symptoms can vary from person to person. General warning signs of dementia, according to the National Institute on Aging, can include:

• Memory loss or poor judgment
• Loss of balance or decreased mobility
• Trouble speaking clearly or expressing thoughts
• Repetition of words, phrases, or questions
• Difficulty reading or writing
• Wandering or frequently getting lost in familiar spaces
• Spending more time on daily tasks
• Loss of interest in normal hobbies or activities
• Social withdrawal
• Changes in mood or personality
• Experiencing hallucinations, delusions, or paranoia³

When to see a doctor

Dementia symptoms, whether mild or severe, can be concerning. Getting an official dementia diagnosis as early as possible will not only rule out other conditions that can mimic dementia but also make a world of difference in the care and support your loved one receives as their condition advances.

Have a conversation with your loved one

After a dementia diagnosis, involve your loved one in a conversation about their condition and potential care planning to help ease their worries and provide peace of mind. When approaching your loved one with your concerns, be mindful of how they may feel and react.  Fear, anger, denial, and sadness are all common emotions that a person recently diagnosed with dementia may feel, but it’s important to have a conversation about care and support early on before the condition progresses. While it’s important to be gentle and sympathetic, there’s a possibility that you may need to take a more direct, hands-on approach, depending on their personality. No matter what, be respectful of their wants, needs, and comfort level.

Here are a few tips to consider when bringing up concerns of memory loss and memory care options to a loved one:

• Keep it simple. Any health care conversation can be emotional and overwhelming, and your loved one may need time to process their diagnosis. It can help to approach the conversation in small pieces to avoid piling on too much information too fast. Try planting the seed one day, then approach the discussion again a day or two later.
• Choose the right time and place. Help the conversation go as smoothly as possible by talking to your loved one during a time when they’re relaxed and at ease. Also, select a comfortable location with few distractions, such as their living room or a quiet café.
• Approach the conversation gently. Try using “I” statements, such as “I’m worried about you” or “I’ve noticed you’ve struggled a little with your memory lately.” Using “I” statements in heavy conversation or conflict is an effective communication strategy that helps us talk about difficult feelings. “You” statements, such as “You keep leaving your wallet at home” or “You’re so forgetful lately,” can come off as accusatory and cause your loved one to become angry or defensive. ”I” statements, however, tend to come off as less hostile and open the conversation up to further discussion and possible resolution.⁴
• Avoid using the words “dementia” or “Alzheimer’s.” These words carry a lot of weight. Make sure you have an official diagnosis before using them. Until then, try to use more general terms like “memory lapse” or “forgetfulness.”
• Find out if your loved one is aware of their memory problems. If they are aware, they may be relieved to talk it through with you. However, they may deny your concerns or become angry. In this case, it can help to have a close friend or family member vouch for you. If you go this route, try not to make your loved one feel boxed in or teamed up on. Rather, make sure they know you’re coming from a place of love, respect, and genuine concern for their well-being.

Create a care plan for each dementia stage

Symptoms of dementia typically follow progressive stages, and the level of care your loved one requires will need to be adjusted as their condition worsens. Whether you take on the role of caregiver yourself or hire someone else, you’ll want to have a general plan in place for how you’ll handle your loved one’s ever-changing needs.

The following sections will help guide you through in-home dementia care from the mild early stage to the late stage when dementia symptoms become more complex. Keep in mind that your loved one’s care plan should be crafted in tandem with recommendations provided by their primary healthcare provider at each dementia stage.

Early-stage dementia

Early on, dementia symptoms are mild and often get overlooked or misclassified as age-related forgetfulness. People with early-stage dementia are typically still able to live independently and may not exhibit clear signs of mental decline. They may forget someone’s name or misplace items occasionally but are still seemingly able to follow their daily routine.

Here’s how you can support a loved one with early-stage dementia:

• Monitor their emotional health. Many adults who are facing a recent dementia diagnosis may show signs of anxiety, grief, or anger. They may become frustrated or even scared when experiencing a memory lapse. Do your best to comfort them and let them know they’re not alone in this. If their emotional or mental health noticeably declines, it may be wise to speak to their doctor.
• Talk with them about what they want out of dementia care. As stated in the section above, involving your loved one in the creation of their care plan is important, but especially in the early stages of dementia when their symptoms are mild. If you’ve already initiated a conversation with them, continue talking with them about what they find important in their care now and what may be important to them as their care needs increase in the future.
• Engage in mind-stimulating activities. Light exercise, puzzles, word searches, reading, and simple crafts are all great activities for someone with dementia. Not only do they engage their mind, but they also fill their days with productivity and a sense of accomplishment, which can help build their confidence during an emotional time.
• Find a support group. Support groups provide connection and understanding, whether for those with dementia or their families. These groups often meet in community centers, libraries, local cafes, or online. There are many ways to connect with a support group, including through your local Area Agencies on Aging or by joining a Facebook group.
• Set a daily routine and help them stick to it. A simple, easy-to-follow routine will help provide structure and consistency when life feels overwhelming. Set a schedule for meals, bathing, and exercise. It can also be extremely beneficial to set time aside each day for engaging and dementia-specific activities, such as arts and crafts or community-based events.
• Assess the home’s safety. The home in which your loved one resides throughout the course of their dementia should be carefully inspected for potential safety hazards and fall risks. Here are a few items to consider when creating a safe environment for your loved one with early- to mid-stage dementia:
  • Install grab bars near any stairs, bathtubs, and toilets and place non-slip mats on kitchen and bathroom floors.
  • Install nightlights in interior rooms and hallways.
  • Store potentially toxic or hazardous items, such as tools, medications, sharp objects, small appliances, and cleaning supplies or other toxic liquids, in a secured cabinet.
  • Store any firearms in a locked safe or cabinet.
  • Consider purchasing kitchen appliances that have an automatic shut-off feature.
  • Remove rugs and excessive clutter from the floor, as these can be tripping hazards.
  • If your loved one is no longer driving, keep car keys in a secured location.

Mid-stage dementia

In mid-stage dementia, symptoms can range from mild to moderate, and signs of cognitive impairment start to become more noticeable. People in this stage may frequently lose items, struggle to concentrate on tasks, forget about appointments, or begin withdrawing from their social circle. They may start to become easily disoriented or even begin wandering. For this reason, it’s common for a professional or family caregiver to step in to provide more frequent care and support. 

Here’s how you can support a loved one with mid-stage dementia:

• Help them complete their activities of daily living (ADLs), such as eating, dressing, bathing, and using the restroom.
• Adapt their routine and daily activities to accommodate their abilities. Try to stick to their set routine as best as you can, but consider adjusting things like their exercises, activities, and bedtime so they better suit your loved one’s abilities.
• Closely monitor their nutrition and hydration. Poor nutrition and dehydration can worsen some dementia symptoms and potentially increase the risk of further health complications.
• Play music. Music is a powerful tool that not only boosts the brain’s dopamine but can also spark fond memories, improve cognitive skills, and help reduce stress. Try starting with a well-known favorite, then branch off into songs from their past.
• Help them stay socially active. Maintaining friendships and social connections is paramount to anyone’s well-being, especially those with dementia. Help your loved one keep in touch with people by taking them to social events, community outings, and scheduling time to spend with friends and family.
• Consider respite care. It’s completely normal to feel overwhelmed or burnt out as you do your best to care for an aging loved one with dementia. If you get to a point where you’ve reached your limit, respite care is a wonderful option. A trained professional caregiver will take your loved one’s care needs into their own hands while you rest and recharge, whether for a few hours or several days.
• Plan ahead for future dementia care options, such as in-home care services, adult day care, assisted living, or memory care. Mid- to late-stage dementia can start to feel overwhelming as symptoms increase in severity and frequency, particularly if you’ve provided your loved one’s care on your own up to this point. Acquiring additional care can help alleviate that strain and restore your and your family’s peace of mind.

Late-stage dementia

In late-stage dementia, symptoms become quite severe and complex. Those with late-stage dementia may experience frequent agitation or anxiety and are no longer able to live alone. Some, though not all, may also experience extreme behavioral changes, such as paranoia or delusions. Their verbal and physical capacities also become more severely impaired, and they may develop symptoms like urinary incontinence or loss of mobility. This stage can be quite difficult for both the person experiencing the symptoms and their family, so it’s a good idea to explore more advanced memory care options and sources of support.

Here’s how you can support a loved one with late-stage dementia:

• Seek full-time care. At this stage, your loved one’s symptoms will have progressed significantly, and they will likely require someone to watch after them 24/7. You might consider hiring a live-in caregiver or searching for advanced memory care facilities in your area.
• Prioritize their quality of life. The best thing you can do for them is offer reassurance and companionship. Do your best to ensure they’re safe, clean, and comfortable. Continue engaging them in any activities they’re still able to do, even if it’s simply listening to music or having a book read to them.
• Prepare for hospice care. Sadly, late-stage dementia will eventually advance into end-stage, and any curative treatment will no longer be the goal. Hospice care can ensure that your loved one is comfortable and able to live their final days and weeks as fully as possible. Keep in mind that to receive hospice care, you typically first obtain a physician’s order, and two physicians must certify that hospice care is appropriate. A six-month life expectancy is also usually an eligibility requirement. You can talk with your loved one’s primary healthcare provider about further hospice requirements and how to prepare.

Find support every step of the way

While it’s possible for your loved one to remain at home through the stages of dementia, it can be difficult to navigate their care all on your own. At HomeWell, we help reduce that strain by providing meaningful in-home care services that work in tandem with your loved one’s existing healthcare services.

With our Alzheimer’s and dementia services, delivered by caregivers trained specifically in dementia care management, your loved one can experience a greater sense of comfort and security at home. At the same time, you can rest assured knowing they’re in good hands.

Interested in more tips about in-home care or family caregiving? Check out our downloadable Trusted Tips and Guides to access a wide range of helpful insights about caring for your aging loved one’s health, quality of life, and more.

Sources

1. Dementia Care: Keeping Loved Ones Safe and Happy at Home | Johns Hopkins Medicine
2. What Is Dementia? | CDC
3. What Is Dementia? Symptoms, Types, and Diagnosis | National Institute on Aging (nih.gov)
4. Using I Statements Instead of You Statements in Arguments (relationshipsnsw.org.au)