Caring for a loved one with dementia is far from an easy task. Not only is it immensely difficult on an emotional level to watch a loved one experience this disease – but the act of caregiving itself can be exhausting, strenuous, and isolating.

 

While caregiving can be one of the most immensely rewarding experiences in a person’s life, it does not come without its own set of challenges. For caregivers of dementia patients, the challenges are particularly unique and complex.

 

While caregiving for people with dementia can feel utterly isolating, there are actually over 11 million Americans providing unpaid care for people with dementia. According to alz.org, “in 2020, these caregivers provided an estimated 15.3 billion hours of care valued at nearly $257 billion.”

 

These numbers are staggering, and they prove something about dementia caregivers that isn’t necessarily true for other caregivers – at least across a broad scale. That caring for a person with dementia means putting in more hours for more years than most other family caregivers have to.

 

One reason might be that dementia patients are rarely placed in nursing facilities. There are a variety of reasons for this. For one thing, finances and insurance policies can prevent a person from living in a facility. Medicaid usually only pays for temporary care, for example, and dementia patients require long-term care.

 

At the same time, dementia patients tend to benefit from staying at home. Unfamiliar surroundings can cause dementia patients to become stressed, anxious, and depressed. It can also increase levels of confusion and disorientation. This can actually accelerate the progression of the disease. Familiar surroundings are much more comfortable for dementia patients, so some families opt to keep their loved ones at home for this reason.

 

Finally, if a person has a family member who has the capacity to provide the care they need, this can be a far less expensive option for families.

 

In all, about 85% of Americans living with dementia remain at home or in assisted living facility. The other 15% live in nursing homes, according to the Population Reference Bureau. Those who live in assisted living facilities have the option of having a family caregiver available to them. Usually, people at assisted living facilities do not use hired caregivers, because assisted living is designed for seniors who are relatively independent.

 

The sheer number of dementia patients living at home means that family caregivers work with dementia patients on a larger level than other diseases. A study by Health Affairs actually found that “while people with dementia account for only about 10 percent of older adults living at home or in residential care, 41% of family caregiving hours are spent assisting loved ones with Alzheimer’s and similar diseases,” according to Forbes.

 

Additionally, researchers found that dementia patients required care at a more intense level than for seniors with other ailments. According to Forbes, “caregivers who lived with family members with dementia provided nearly 50% more hours of help than those who lived with aging parent without dementia – an average of 143 hours per month (almost 36 hours per week, or nearly the equivalent of a full-time job).”

 

Too often, dementia caregivers are forced to give up their jobs and careers in order to be there for their loved one. If they are unable to, they are forced to find a balance that leaves little time for sleep or a life outside of work and care.

 

All this to say, caring for a dementia patient is far from easy – but if you’re a caregiver, know that you aren’t alone. This is an experience that affects millions around the country – and because of that, there are support groups and resources available for those in your position.

 

Today, we’re going to talk about the challenges and strategies for caring for a loved one with dementia. We hope that this episode will help you to feel supported as a caregiver and provide you with tactics that can make your life and experience a little less stressful and a little more rewarding.

 

HomeCareAssistance.com says, “caring for someone with dementia is a practice in defying logic,” and we couldn’t agree more with that sentiment. Our instincts not only as caregivers, but as the sons, daughters, or spouses of a person with dementia, is to confront challenges with logic.

 

For example, if your loved one is having a hallucination of their late mother, you might think that saying, “you’re hallucinating, she’s not really there,” would be enough to snap your parent back into reality. Unfortunately, though, using logic can actually do more harm than good. By telling your loved one that what they are seeing is not real, you are expressing to them that you don’t take them seriously, don’t believe them, and can’t be trusted.

 

Not to mention, a person with dementia could feel terribly frightened, frustrated, and alone if they think their version of reality isn’t real. Keep in mind that to your loved one, these hallucinations are as real as you are. Denying that reality can cause dementia patients to have frustrated or desperate outbursts.

 

So, how can you possibly care for someone if using logic doesn’t always work? We’ve found that patience, gentleness, and empathy work a lot better than logic in many situations. Let’s look back at our hallucination example. While it might seem strange, it can be a lot more effective to go along with the hallucination and try to defuse the situation slowly, than to outright deny that it’s happening.

 

For example, you might say, “Oh yes, Grandma is here, and she loves you, but right now we need to focus on eating your breakfast.” This validates what your loved one is seeing and feeling, while distracting from the situation, so you can shift your loved one’s focus to something else.

 

In a lot of ways, that’s what caring for a dementia patient is all about. When you’re unable to explain something using logic, gently go along with it until you can distract from the situation. Dementia patients tend to experience a variety of emotions in a single day – and can go from happy and cheerful to angry or explosive out of the blue.

 

By staying calm, patient, and empathetic, you can help your loved one to feel safe, secure, and loved regardless of how they’re feeling. And responding to anger with patience and empathy is far more effective than fighting fire with fire, even though the latter can be tempting sometimes.

 

The same goes for repetition. While you might feel frustrated having to repeat the same information again and again, keep in mind that your parent has no idea she’s heard it before. She’s not trying to be irritating or malicious by asking to hear something again – she simply doesn’t know better.

 

If you react with frustration or impatience, it can cause unnecessary hurt feelings and even damage trust between the patient and the caregiver. While it might be annoying having to repeat something again and again, it’s well worth keeping your loved one in good spirits and feeling confident about themselves.

 

On that note, let’s talk communication in general. When communicating with a loved one with dementia, make sure to make eye contact, speak slowly, and address your loved one by name. Instead of interrupting or getting frustrated when your loved one takes a long time to say something, wait for them to finish and do your best to understand what they’re saying, even when it’s difficult. It can help to look at their body language and facial expressions.

 

If you still can’t tell exactly what they’re saying, you might be able to decipher their emotions, and act accordingly to calm anger or encourage good humor.

 

Chances are, if you’re caring for a person with dementia, you will feel frustrated pretty often. It’s not just hallucinations, mood swings, and repetition that you have to worry about – confusion and disorientation can be frustrating, too. If your loved one is confused about something, the best thing you can do is simplify the situation – and, again, react with patience and kindness.

 

Now, I know that being patient is far easier said than done. Still, patience is absolutely essential for caregivers. Not only will a consistent lack of patience hinder your relationship with your loved one, but symptoms can actually worsen in dementia patients if they feel unsafe and upset by the situation, they’re in. For example, they might feel they are being attacked or respond with a meltdown if they think they’re being yelled at. So, being patient actually makes your job easier, too.

 

Still, it’s necessary to have an outlet for your frustrations and heartache. Find a friend or family member that you can vent to safely or join a support group for others in similar situations. The more you can talk about and confront your emotions outside of your loved one’s earshot, the stronger and more prepared you’ll feel to face each day ahead. Your patience will be easier to maintain if you have a regular outlet to express your frustrations, too.

 

Now, holding onto patience doesn’t just mean being patient with your loved one. It also means being patient with yourself. Many caregivers put a ton of pressure on themselves to get everything exactly right – but the truth is, nobody is perfect, and caring for a person with dementia just isn’t predictable. There is so much out of your control.

 

The fact that you show up each day, that you are putting your all into being there for your loved one, that alone makes you a wonderful caregiver. At the end of the day, your loved one needs to feel safe and loved, right?

 

So, if your daily routine gets messed up, or you just can’t get your loved one to eat their breakfast one morning, be kind to yourself. That doesn’t mean you’re not doing a great job. Bad days are bound to happen, and they are not your fault.

 

Now, some caregivers might find that they are only having bad days – that they’re completely over their heads and this new role just isn’t working for them or their loved one. If this is the case, try taking some time off and finding a bit of respite care. It might just be that you need a little break.

 

Remember – this role is a huge adjustment. Caregiving is not something that can be mastered overnight, and many don’t realize just how difficult it is until they’re in the thick of it. Most people will find that after a few months of adjusting, they get the hang of things. It helps to find people who can delegate some of the chores and errands – like grocery shopping, transportation, or cleaning the house. When you’re no longer doing absolutely everything yourself, you’ll find that you can better focus on the care itself.

 

We’ve talked a lot so far about reactions. Being kind, patient, and empathetic with your loved one and yourself, regardless of the situation. Now, let’s get into actions.

 

Dementia patients need to stay stimulated mentally and physically, as long as they are able. Nourishing the mind and body are key to strengthening memory, slowing the progression of the disease, and keeping your parent engaged and in good spirits.

 

With that in mind, it’s important to have activities for your loved one to participate in. Activities like baking, dancing, singing, or doing puzzles can help your parent feel entertained and engaged – and increase their socialization, which is key to fighting depression. You can also take your parent on walks, to museums, or to a quiet and peaceful spa day.

 

That said, your loved one might respond better to some activities than others. Don’t force your loved one to do anything they don’t want to, and if they’re too tired or not in the mood, don’t push. Try something new the next day. You might find that your parent responds to one out of five activities you choose – but even that one activity is a huge victory.

 

Your loved one might also enjoy participating in household tasks. Chores like sweeping, folding towels, or wiping surfaces can help your loved one feel a sense of accomplishment – and like they have some of their independence back. Not only that, but these activities engage the body and mind. Anytime you can keep your loved one moving and thinking, go for it. If your loved one is interested in helping with the chores, encourage them to try.

 

Of course, daily activities are about more than stimulating entertainment. For dementia caregivers, daily activities also include bathing, eating, and dressing. Each of these activities come with their own set of challenges, but with the right preparation, you can do your best to keep everything as seamless as possible.

 

When it comes to bathing, it’s recommended that you choose a time when you know your loved one is the calmest. For instance, if your loved one tends to wake in a cheerful and peaceful mood, mornings are the best time to have a bath. Try to establish a bath time routine and be easy on yourself if that routine is ever pushed back or broken on a hard day.

 

Remember that for your loved one, bathing can be an uncomfortable experience, especially if they’re being bathed by one of their children. You can distract from the situation by conversing about other topics or playing soft music during bath time. Try to be in good spirits during bath time, so you can help your parent feel happier and more comfortable. You can also try sponge baths every other day or every few days, so you don’t have to deal with bath time on a daily basis.

 

Eating can be frustrating – many dementia patients don’t like to eat at all, and if they do, they’re drawn to junk food. It can help to make dishes colorful and exciting. Make smiley faces out of colorful fruit, for instance, and refrain from serving the same three meals every week. Food that varies in texture, color, and taste will be more appealing.

 

Use mealtime as an opportunity to socialize with your loved one. Make conversation instead of turning on the TV and, if you can, eat your meals at the same time. This can help maintain a sense of normalcy and security. Remember that your loved one might take a long time to eat – this is another instance where patience is key.

 

When it comes to dressing, it can help to lay out outfits ahead of time, either the night before or before your loved one wakes up. Consider choosing two or three options so your loved one can choose what she wants to wear in the morning. Keep the number of choices small and simple – but have at least two options so your loved one can hold onto a sense of independence.

 

Allow your loved one to dress themselves if they are able – even if it takes a long time. Just as wiping surfaces or sweeping the floor can help your parent to feel a sense of accomplishment, so can getting dressed.   

 

Caring for a loved one with dementia can be an immensely difficult duty to take on – and we commend you for making the choice to care for your loved one. At the end of the day, our best advice is to be patient, gentle, and empathetic. Kindness can be a superpower – and it can help make these remaining years rewarding, when they could easily be miserable.

 

Be kind to yourself, too. You’re doing a great job.

 

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

 

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Join us next time on All Home Care Matters where we will be discussing Online Resources for Families and Caregivers.

 

Sources:

 

https://www.prb.org/the-demography-of-dementia-and-dementia-caregiving/

 

https://homecareassistance.com/blog/top-five-strategies-dementia-caregiving

 

https://homecareassistance.com/blog/challenges-dementia-caregiving

 

https://www.forbes.com/sites/howardgleckman/2015/10/26/the-challenges-of-caring-for-a-loved-one-with-dementia/?sh=176494723065

 

https://www.caregiver.org/resource/caregivers-guide-understanding-dementia-behaviors/

 

https://www.caringseniorservice.com/blog/challenges-alzheimers-dementia-caregivers

 

https://www.ucsfhealth.org/education/coping-strategies-for-alzheimers-disease-caregivers

 

https://www.agingcare.com/articles/alzheimers-disease-care-at-home-139990.htm

 

https://www.alz.org/alzheimers-dementia/facts-figures

 

https://www.alzheimers.net/2014-03-06-stimulating-activities-for-alzheimers-patients