Caregivers and Dementia: How to Get the Support You Need

While caregiving for a loved one is a noble calling that comes with its own rewards, it can also be a daunting and demanding pursuit. It requires an immense investment of time and money and can take a toll on your physical and mental health. This can have many side effects on a caregiver, including stress, fatigue, depression, relational issues, and even physical health. Studies have shown that caregiving for a person with dementia is a much greater burden than caring for an elderly person without memory impairment.

There are many loved ones who find themselves in the position of caring for an elderly loved one with dementia. In fact, 80% of people with dementia receive care in their own homes – oftentimes, this care is provided by a relative who is not a professional caregiver. It’s important that if you find yourself in this position, know that you are not alone and there is support out there.

In this guide, we discuss how to prioritize your own well-being as you care for your loved one. Read on to learn how to care for someone who is in the early stages of dementia, practical ways to find support, and how to know when it’s time to bring in outside help.

The Early Stages: Making a Plan

Being told that your loved one has dementia is life-changing, and you shouldn’t overlook the emotional distress that comes with this diagnosis. Even before you start defining a concrete plan, the first hurdle to deal with is coming to terms with the diagnosis. This takes time and patience. It’s important to take this time, even though the sense of urgency may tempt you to rush forward. Think through your emotional needs before addressing the practical ones.

Once your mindset is ready, that’s the time to put together a plan. It isn’t easy to face the challenges ahead, but it’s better to have a plan early rather than late. Keep in mind that dementia doesn’t always affect everyone in the same way. So it is important that you come up with a plan that addresses the specific needs of your situation.

When making your plan, you should start by asking some of these important questions:

  • What type of care do we value?
  • Do we pursue memory care?
  • Do we need to relocate anyone so that our loved one is close to the care they need?
  • How should we establish power of attorney for our loved one?
  • What are the different family members’ responsibilities in the care of our loved one?
  • What do we need to know about this disease to effectively care for our loved one?

Answering questions like these is the beginning of a plan, but they need to be put together to formulate a real plan. Start by getting all the people together that are going to be involved. This doesn’t necessarily have to be all done in one session and not all parties need to be present. Spread the workload over multiple meetings if needed.

Once you are all together, identify the problems and what actions are required. This may include things like “Someone needs to care for them on Thursdays and Fridays”, or “One of us has to make sure that they are getting their prescription filled”, or even “Somebody needs to have them move into their home”. Lay these out, determine the priority of each, and find the resources needed to address them. Once this initial identification is done, assign the action items to each of the people present and plan to follow up with everyone at a later date.

Putting a plan together can be complicated. Yet if it is broken down into manageable pieces, the intimidating aspects diminish and you can begin to move forward. Acting on a plan not only helps you succeed in caring for your loved one but also drives you forward through what can be a life-halting experience.

Finding Support

There’s no need to go through the challenge of caregiving alone – there are so many people that you can reach out to for help. Find trusted friends, family, and other community members that can help keep you from falling into caregiver burnout. Caring for someone with dementia is a challenging calling, but there are many resources out there that can not only help you learn how to better care for yourself, but also how to better care for your loved one.

Where to Look for Help

  • Caregiver Nation: This is a Facebook group filled with people caring for others and is full of support, information, and resources.
  • Family Caregiver Alliance: This site provides resources for people caring for others with all sorts of health conditions, including dementia and Alzheimer’s.
  • Caregiver Action Network: This group provides resources for caregivers including forums, tips for caregiving, and other helpful information.
  • Alzheimer’s Association: For information on memory impairment, this is the go-to site when it comes to Alzheimer’s and other dementia-related diseases. It provides information on the disease, its variations, symptoms, and caregiving.
  • CDC Alzheimer’s Caregiving: The CDC provides helpful information on how to care for someone with dementia as well as for oneself as a caregiver. This is an excellent resource available for those seeking more information.

Taking a Break

We are all familiar with the more stressful stages of life, and taking a break from our responsibilities can be essential in getting the refreshment we need. The same is especially true when you are caring for someone with dementia – lack of time alone, financial strain, witnessing the suffering of a loved one, and many other difficulties. We approach these issues with the same method as any other tough situation, by taking a break from the responsibility for a time.

How to Take a Break

Caring for someone else can keep you from taking care of yourselves, but how do you take a break from being constantly needed? Here are some recommendations:

  • Little Breaks: Have a few trusted people that can care for your loved one. Even a couple of hours to clear your mind and do something else can make a world of difference.
  • Adult Day Care: Find a local place where your loved one can be trusted in the good hands of an establishment trained to care for cognitively impaired adults. This is a great opportunity to give your loved one some time with their peers, but also provides an opportunity for you to take care of yourself.
  • Home Health Aides: Search for someone who is trained to care for people that can come into the home and help your loved one. This can be a very valuable way of taking off some of the load that comes with being a caregiver while still having confidence in the care they are receiving in your absence.

What to Do During Breaks

Now that you’ve found some valuable time for yourself, what do you do with it? Here are some recommendations for how to use your time effectively to rejuvenate yourself mentally and physically:

  • Physical Activity: Find something you enjoy that gets your body active. Go for a walk or run, go to the gym, or play an active sport like basketball or golf. Whatever it is, physical exercise can do wonders for your physical and mental health.
  • Engage Socially: Take the opportunity to see people that you normally are unable to see. Go to dinner, see a movie, attend a concert, or go shopping. Spending time with others can stimulate you to be a better caregiver by knowing that there are people that care for you and want you to succeed.
  • Treat Yourself: Give a little something to yourself. Go for a spa day, get a massage, go to the beach, play a game, or eat a delicious dessert. Life is meant to be enjoyed, not only in caring for your loved one but also in the simple pleasures of life.

Developing Healthy Habits

Developing healthy routines is an excellent way of caring for your loved one as well as yourself. Finding things that you both enjoy doing together is a great way to make these routines more rewarding. Doing daily activities helps build a routine that gives your life structure. This can help foster familiarity in your loved one’s life that grounds them, which in turn can minimize the many difficulties of caring for someone with dementia. This disease doesn’t mean that you and your loved one have to stop enjoying life, but you can find new ways to experience its joys together.

Here are some activities to consider:

  • Tell stories with each other from your youth, listening and sharing together.
  • Go on walks to places you’ve been, and some that haven’t. Reinforce old memories and make new ones.
  • Plant a garden that produces fruit that can be enjoyed or shared.
  • Draw, paint, or sculpt, finding ways to create and express yourselves artistically.
  • Enjoy caring for pets together, meeting the needs of another creature as you meet the needs of your loved one.
  • Listen to music, both to their taste and to your own. Even play an instrument if you are so gifted.

There are many activities available, so get creative and ask your loved one for input and you’ll always find fresh ways of spending time together. These routines and habits will strengthen your relationship with your loved one, grow you as a caregiver, and bring joy to the experience.

Seeking Outside Help

There may come a time where the demands of caregiving become too much. With the many responsibilities required of caregivers, it can be difficult to prioritize your own needs and still provide the quality of care required by someone with dementia.

While this is even true during the early stages of the disease, the challenges will continue to grow as it progresses and symptoms become more pronounced and harder to manage. Mood changes, hallucinations, and delirium are common and will steadily increase with time. If the care required becomes too much and you are unable to care for your own needs, it might be time to consider professional help.

Home Health Care

As previously mentioned, a home health aide can provide a much-needed break, but what do you do when that need is greater? This avenue is also available for those who need a more long-term and permanent solution. Sometimes the many responsibilities of life make it impossible for you to fulfill the role of a full-time caregiver. This aide can serve as a trusted individual that can provide the care required for your loved one, while also giving them the opportunity to remain home.

Memory Care Facilities

Memory Care Facilities are designed specifically to meet the needs of people suffering from dementia. They provide patients with the greatest possible quality of life, ensure safety, and provide for medical needs. You can read more about these facilities in our article on Memory Care Facilities. This is a great option to consider for those who want to get the best care possible for their loved one but cannot commit themselves to full-time caregiving.