Caring for Dementia

Caring for a loved one with dementia is filled with both challenges and moments of connection. As the caregiver, the emotional, physical, and mental toll can be overwhelming and cause a lot of stress in our daily lives. In this blog article, we will explore various strategies to cope with stress, and ways to prevent avoidable or modifiable stress.

1. Education and Understanding

Knowledge is power, and when it comes to dementia, understanding the condition is crucial. Take the time to learn about the specific type of dementia your loved one has, its typical progression, and the commonly associated behaviours. This knowledge not only will help you anticipate possible challenges, but also enables you to respond more effectively to the situation. There are many online resources caregivers can use to elevate their knowledge and learning on dementia. We’ve compiled a list of helpful resources here.

2. Prioritize Self-Care

It’s easy for caregivers to neglect their own well-being while focusing on the needs of their loved ones. However, self-care is not a luxury; it’s a necessity. Self-care can look different for each person, we like to use these two categories: Thriving and Surviving. Self-care is going to look much different for someone who is just surviving versus someone who is thriving. We’ve compiled a short list of manageable self-care tasks for those who are just surviving.

Some simple self-care tasks:

• Take a deep breath with your arms above your head, exhale as you reach to your toes x3. – Do this everyday to start your day.
• Drink 1L of water a day.
• A 10 minute walk.
• Write down three things your grateful for in the moment.
• Listen to a song that calms you.
• Meal prepping (start small by meal prepping for 2 days).
• Close your eyes and practice mindful breathing. Listen and concentrate on your breaths, feel your breath fill and leave your lungs.
• Declutter your living space. This doesn’t need to be a whole room, you could pick an area to clean and organize, or you can choose to pick up one type of thing (i.e. laundry, garbage or dishes).
• Make your bed
• Write a “To-Do” list the night before, include at least 5 tasks.
• Make your living space smell nice (we know this can be a tough one with incontinence issues).
• Eat a nutritious snack or meal.
• Moisturize your skin.
• Give yourself a manicure/clean your nails.
• Smile at yourself in the mirror.
• Brush your teeth twice a day.
• Send a positive message to someone you care about.
• Wake up a half hour early to have a hot coffee in peace.
• Read a book.
• Express your thoughts to a friend or in a journal.
• Follow lighthearted social media accounts.
• Watch lighthearted television programs.

When we can get into a consistent habit of doing something to take care of ourselves everyday, you’ll start to see a shift from surviving to thriving. Those who are thriving have the basic self-care tasks mastered and can seek more exciting forms of self-care such as travel, hobbies and going out with friends. This may not always be possible when we are stuck in survival mode. It’s important to not overwhelm yourself and start with attainable goals. Here’s a challenge below that we’ve used to help people develop purposeful habits.

Challenge: Pick one thing from the above list and do it every single day for 21 days. (The magic number) If you don’t complete the task, you have to start again at Day 1. If you’re finding you’re not able, or not motivated to do the task you picked, try another one, or pick something of your choice not on the list.

Fun fact: It takes 21 days to re-wire your brain to create a habit!

3. Seek Support

Caregiving is not an independent journey, there are millions of families all over the world struggling to understand this complex disease. We can lean on others for support by establishing a strong support system of family, friends, and people in local/online caregiver groups. Sharing experiences and learning from others who have faced similar challenges can provide us with emotional support and practical advice.

Sometimes the stresses of caregiving plus the extra ad-ons of life can affect our mental well-being. If you believe your emotional state to be bordering a level of high risk or emergency, it’s important that you call or seek professional support right away.

4. Join Support Groups

Participate in caregiver support groups, either in person or online. Connecting with others who share similar experiences provides a sense of community and understanding that can feel comforting.

Facebook has many different online support groups filled with others who are in every different stage of caregiving. From those who have loved ones in assisted living, long-term care, people who live with their loved one, live just down the street, or in another city.

Instagram has many accounts of caregivers caring for their loved ones, showing us what works for them. On Instagram you’ll also find many dementia professional’s offering great advice!

Caring for Dementia will be launching our own virtual support groups, the first group will be February 19th 2024.

Learn more about our support groups here.

5. Utilize Respite Care

Respite care provides temporary relief for caregivers, allowing them to recharge and attend to their own needs. Whether it’s through in-home care services or short-term residential care, respite care can be an important resource. Contact your local Community Care Services organization to find out more information on the process to qualify for respite care. (Canada)

6. Adult Day programs

We strongly encourage the use of adult day centers. These centers are typically open for either a day or a half day, allowing caregivers to have a few hours alone. There are private and subsidized adult day programs, get in touch with your local community care or home care organizations to inquire about programs around you. Many of these centers are run by trained dementia professionals and provide stimulating activities, dining experiences, and opportunities for meaningful social connection.

7. Professional Counseling

Consider seeking therapy or counseling to cope with emotional challenges associated with caregiving. Professional therapists can offer guidance and coping strategies to assist you with your mental health.

If you’re seeking personalized dementia support there are many dementia specialists that can offer support. Consider using Caring for Dementia’s virtual care service, our behaviour support specialists are experienced in managing responsive behaviours for people with dementia. Learn more about Caring for Dementia’s virtual care service here.

8. Effective Communication

As dementia progresses, communication can become increasingly challenging. Develop effective communication strategies that accommodate your loved one’s changing abilities. Use simple language, maintain eye contact, and be patient. Non-verbal cues, such as touch, facial expressions and gestures, can also assist the person in understanding what you are trying to convey.

Read our blog about the importance of tone and body language here.

9. Stay Socially Connected

Maintain social connections with friends and family, as isolation can increase the emotional toll of caregiving. Regular social interactions can provide support and help prevent feelings of loneliness or depression. When caregiving for another person, it’s difficult not to feel like we are losing our identity, as everything we do, one way or another, is tied to that person. This can cause depressive symptoms to manifest; isolation, sadness, and feelings of hopelessness and helplessness. It’s important to reach out to a medical professional if you are having depressive symptoms, they may be able to offer practical guidance for your particular situation.

10. Be Flexible

The first step is to accept that you cannot control every aspect of daily life or the routine. It’s important to set realistic expectations for yourself and your loved one. Understand that there will be good days and challenging days, and it’s okay not to have all the answers. If, for instance, you’ve planned a shopping day but it turns out to be a challenging day, consider rescheduling for a day when they may be less agitated, creating a better experience for you both. 

11. to change their behaviour we must first change

Individuals with dementia lack the capacity to regulate their emotions or intentionally correct their behaviours. Many times, behaviours seen as frustrating or manipulating can appear intentional, but we must be mindful of the persons cognitive impairment and how it can impact their lives and interactions with others.

It’s possible that some behaviours manifested long before a dementia diagnosis and that their cognitive impairment could intensify these behaviours, but we strongly believe that every behaviour has a meaning. We call these “responsive behaviours” because it is in response to something external or internal. In order to change behaviour triggered by something external, we must first change something within us; whether it’s our approach, our communication, our environment, our pace, or our routine. Internal triggers could be related to areas such as pain, discomfort, illness, or medication. Internal triggers to responsive behaviours should be addressed with a medical professional to get the correct treatment.

12. Respect Your Boundaries

Recognize your own limits and set boundaries. It’s essential to understand that you cannot do everything, and it’s okay to ask for help or say no when needed. This is especially important when deciding how long we are going to care for our loved one at home. Boundaries and limits may change the more comfortable we become in our caregiving role, but it’s also okay if they don’t. Whatever you feel is right for your loved one and yourself, set limits and boundaries to ensure both your needs are being met.

13. Accept Help

Be open to accepting assistance from others. Whether it’s a friend running errands, a family member helping with caregiving tasks, or professional caregivers providing support. It may be difficult to allow others to help, part of the difficulty is giving up control of the situation- because you know your loved one best. If you’re depending on others to provide care, of course you have standards, and of course you expect those standards to be met. First, we should recognize who we are asking for help, ensure they are knowledgeable about dementia, and understand how to effectively approach and communicate with your loved one.

14. Celebrate Small Wins

Acknowledge and celebrate the small victories and positive moments while you’re caregiving. Focusing on positive aspects can help maintain a more optimistic outlook and can allow us to feel better about our situation on challenging days. Take pictures and make notes of all the trips into town, coffee and lunch dates, car rides, family gatherings, or special moments. Reminisce on these moments when days are tough, as we have a tendency to focus, stress and worry about the negatives.

15. Give yourself grace

It’s okay to walk out of the room (assuming your loved one is safe) take a couple deep breaths, and come back. Depending on their cognition- every day is a brand new day. They may not have any memories or feelings associated with the day before; so whatever happened, let it go and start new the next day. Understand that we will react, or want to react emotionally to the person, we are human! What we try to strive for, is to catch ourselves before we become angry, frustrated or upset, and bring ourselves down with coping strategies that work for us.

16. Physical Exercise

Incorporate regular physical activity into your routine. Exercise is not only beneficial for your physical health but can also reduce stress, improve mood, and enhance overall well-being. Even if you’re able to do a couple of stretches a day, or a short 10-15 minute walk, keeping physically active is important for you and in turn, will help your loved one.

17. Educate Family and Friends

Educate those around you about dementia so they can understand what you and your loved one are going through. The best way to “educate” family is to invite them around. Invite them to the house or to lunch with you and your loved one, this way they can see first hand what it’s like to care for someone with dementia. This could encourage more understanding and empathy towards the situation, and can provide meaningful support from friends and family who may not fully comprehend the aspects of caregiving.

18. Stay Informed About Resources

Stay informed about available resources in your community. Local organizations, government programs, and healthcare providers may offer services and support specifically designed for dementia caregivers. Follow social media accounts of your local dementia organizations as sometimes they have workshops, courses, groups and research studies for you to participate in.

19. Legal and Financial Planning

Address legal and financial matters early on, such as power of attorney and advance directives. Having a clear plan in place can alleviate future stress and ensure your loved one’s wishes are honored. Some people may need to use an Elder Care attorney, this is advised if you’re working with the persons money. Learn more on Legal and Financial planning here.

20. Plan for Long-Term Care

Consider long-term care options and plan for the future. Understanding the progression of dementia can help you make informed decisions about your loved one’s care needs over time. One thing we always tell clients is when the persons needs outweigh your abilities to provide care, long-term care should be considered. We must understand that as a persons cognition declines their needs will increase, and as we age our abilities might decrease. In Canada, our long-term care waiting lists are long, in some areas anywhere from 1-3 years. If long-term care is something you are considering in the near future, we advise having their name put on the long-term care list.

You Got This!

Caring for someone with dementia is undoubtedly demanding, but with the right strategies and support, we can become very effective caregivers. Learn, build a strong support network, prioritize self-care, set realistic expectations, be flexible, develop coping mechanisms, utilize respite care, and understand your limits. You are not alone, and by taking care of yourself, you are better equipped to provide the compassionate care to your loved ones. Regularly reassess your needs and adjust your coping mechanisms accordingly.