A Dementia diagnosis is a hard truth for any family to face. Caring for a loved one with dementia can be a stressful, exhausting, and profoundly emotional experience – but with the right tools and preparation, care can be a little easier.  

Too often, the emotional needs of a person with dementia are overlooked or unmet. It makes sense – the physical care can be quite taxing, between feeding, bathing, clothing, and everything else. Not to mention, it’s difficult to be emotionally present for a person with dementia – especially when it reaches the more severe stages. Emotional outbursts, difficulty speaking, and changes in personality can all be barriers in helping a person to emotionally connect. Still, these very difficulties are the reason that our loved ones need our emotional support more than ever.

According to The British Psychological Society, up to a third of people with advanced dementia suffer from depression. Cognitive diseases impact every bit of life, and they can be absolutely devastating to the diagnosed individual. Between increased dependence, a reduced quality of life, and facing higher morality, depression is all too common.

In addition, because of communication struggles, people with dementia can be powerless to make decisions on their own and end up in positions that they are not happy or comfortable with – but they are unable to speak up or defend themselves. Dementia patients are also often excluded from events or activities that family members assume they would not be interested in.

It’s difficult to know how to support a loved one with dementia.  That’s why today, we’re going to discuss the best ways to care for your loved one – not just physically, but emotionally. When we are providing our parents or grandparents with the connection and love they need, the entire family benefits.

It is common for a dementia patient to experience mood swings. You might notice that your mother is quicker to anger, or your father gets frustrated constantly. It can be a battle to get your parent to bathe or even eat – and you might find yourself walking on eggshells. Changes in personality are heartbreaking for the family, and they can feel confusing or overwhelming. You might not know how to respond to your mother, or might take her outburst personally – even when you know that it’s a result of the disease.

Unfortunately, depression is harder to diagnose in dementia patients – because much of the symptoms, like apathy, lethargy, isolation and withdrawal, are also symptoms of dementia. Further, a person with dementia will have difficulty articulating their feelings.

If you are worried that your parent might be suffering from dementia, it’s a good idea to meet with a geriatric psychiatrist. These are mental health professionals who specialize in recognizing symptoms in seniors – and they might be able to detect symptoms that you are not able to.

In addition, the National Institute of Mental Health has a set of guidelines for recognizing and diagnosing depression in Alzheimer’s and dementia patients. The institute recommends that a caregiver examines whether the patient is tearful, hopeless, suicidal, or irritable. If your parent is experiencing these symptoms, whether as a result of the dementia or depression (or both), it’s essential that they are provided with feelings of safety, love, and unconditional support. 

A study by the British Psychological Society found that the more emotional care your parent is given, the less frequent her outbursts will be. Outbursts are a result of internalized fears, frustrations, and confusion.

It can be difficult, or even feel impossible, to understand exactly what your parent is going through. When you feel distanced from your parents’ experience, you might struggle when things become uncomfortable. That’s understandable. It’s heartbreaking to watch a parent’s personality slowly transform into something unfamiliar.

When our parent is often frustrated or angry, it can be hard not to take their words personally. You might feel an urge to fight back, to defend yourself, to argue. The more patience and understanding you show, however, the better you and your parent will feel.

According to Alzheimers.net, as the disease progresses, “it becomes easier to forget that your loved one is still present. Many caregivers are frustrated by their loved one’s inability to communicate their thoughts or remember faces and names. The disease eventually takes away independence so that caregivers become the feet, hands, and minds of people struggling with dementia.” 

Try to keep in mind just how difficult this is for your mom or dad. Imagine waking up and not knowing where you are or having enormous gaps in memory that you simply can’t account for. Imagine struggling with basic needs, like dressing or bathing. Imagine being stripped of your independence and not understanding why.

When your parent feels safe, secure, and loved, she is less likely to grow frustrated or irritable. Of course, that will still happen from time to time, but the outbursts should become less frequent and intense. Why? Because when your parent feels safe and supported, she is in a better position to be strong, calm, and comfortable.

For most dementia and Alzheimer’s patients suffering from depression, treatment includes medicine, counseling, and engagement in activities and socialization. A person with dementia cannot merely “snap out of it” and will not be able to recover on their own. They will require a significant amount of encouragement, support, and medical and professional help.

In addition to providing help for depression, it’s important to ensure your parent has the best possible quality of life. There are plenty of ways to care for your parent and make them feel safe and loved. Understanding the disease and knowing what to expect, as well as how to respond to varying situations, can help to make the experience easier for you and your loved one. 

The type of support you provide will depend on the stage of dementia your parent is facing. Being supportive, loving, and communicative, though, is key regardless of the severity. In the early days, you can begin by educating yourself about the disease and creating a plan for the future.

Be sure to include your parent in the planning. This is their life, after all, so they should have a say in the type of care they will receive and where they will live. Try to respect their choices, when possible, with an understanding that this is already such a difficult transition for your parent.

The more supported they are, the safer they will feel. If your parent wants to remain at home, for example, you may want to explore speaking with a professional home care provider about their memory care services. This is one of the more common choices for dementia patients and their families. For a person with dementia, familiar surroundings mean reduced stress and strengthened memory.

To learn more about home care for dementia patients, listen to our episode on choosing the right type of care for your loved one. There, you will also find insight about other types of care and living situations that might be best for your loved one and your family.

I understand that including your loved one in the conversation might be difficult. If your parent is struggling to express themselves or has difficulty asking or answering questions, that doesn’t mean they don’t have feelings or opinions on the matter. In fact, it can feel embarrassing, degrading, or even heartbreaking to be excluded from these conversations.  

To improve communication, it’s important to be clear, positive, gentle, and to acknowledge your loved one’s feelings. When speaking about challenging topics, keep a calm tone of voice and gentle body language. Avoid using harsh language or sounding frustrated or angry. Even if you feel frustrated, try your best not show it. If your parent believes they are an inconvenience to you, they will struggle even more to communicate with you. Remember, we want our parents to feel loved and supported.

Speak calmly and slowly, using simple words – and be prepared to have to repeat yourself. Only ask yes or no questions, and only provide choices that are realistic. In other words, don’t promise something that can’t be delivered. Provide the truthful information in a calm and reassuring voice and repeat it as many times as your parent needs you to. They are trying to understand, even if that doesn’t seem apparent.

It’s also important to make eye contact. That way, you’re respecting your parent while also helping them stay engaged in the communication. You can also use body language, like holding their hand or leaning toward them, to help them stay focused on the discussion.

Being purposeful with your words and word placement is essential, as well. Avoid pronouns like “he,” “she,” or “they,” can be confusing. Instead, use the full names of people and places. You can also use positive words, like “I enjoyed this,” or “I am so glad we spent this time together.” Finally, choose your last words carefully. The last word is the easiest to remember, so this is the part of the sentence your loved ones will cling to.

The Harvard Health Review explains, “if you ask, ‘would you like to wear the green shirt or the blue shirt,’ only the word ‘shirt’ might stick in the person’s mind, and you won’t get an answer…ask ‘would you like to wear this green shirt today or the one that’s blue?’ and the person will say ‘blue.’ She feels as though she has decided for herself rather than being told what to wear, but the choice has been made so easy that she feels little anxiety about it.’”

Acknowledge your parents’ feelings by letting him know that you see him, and you understand. For example, if your parent is growing irritable or frustrated, don’t ignore that. Say things like, “I understand that you are frustrated and I’m sorry this is something you are facing.” Offer to take a break from the conversation if your parent feels exhausted or overwhelmed.

Communication is not only important for the hard conversations. It’s a way to provide support and friendship to a loved one, on a consistent and routine basis. In the early stages, you can remind them of things like doctor appointments, events, or anything else by writing notes on Post-Its and placing them around the house where your parent will see them. These notes can also be notes of friendship, that remind them of how loved they are and that they are not alone.

Communicating may be a lengthy and tedious process, but its importance cannot be emphasized enough. If you show up one day and take your parent into a long-term care facility or residence without warning, her condition will likely worsen – and she could face feelings of betrayal, shock, depression, or even heartbreak. Never forget that at the end of the day, this is your mother’s life. Your father’s life. Not yours. If possible, include them in the conversation.

Of course, if your parents’ dementia has increased in severity, this simply may not be possible. In this case, your parent might no longer be speaking or they might not understand their surroundings at all. If you have to make important decisions without their input, remember to be patient and gentle with them – and don’t leave them alone to experience these difficult times. For example, if there is no choice but to move them into a memory care facility without communicating with them, do what you can to be present through the move and in the days or weeks following.

In addition to communication, there are ways to help your loved one build their self-esteem and sense of dignity. Offer praise and encouragement whenever you can – especially if your parent has achieved a small victory, like remembering an appointment or even putting on a shirt by herself. At the same time, don’t berate them or criticize mistakes or forgetfulness. It is common for a person with dementia to forget what clothing is appropriate for certain occasions, for example. If your parent puts on a t-shirt before a wedding, don’t be critical or accuse her of making a mistake. Be patient, warm, and gentle as you help her pick another blouse to wear.

A dementia patient’s self-esteem can also be increased by engagement in social activities. While your parent is still able, attending support groups, classes, or activities can help them to feel more dignified and happier. If your parent is past the point of being able to participate in socially challenging events, help them with memory games, books, hobbies or other stimulating activities that can keep them busy and engaged.

If your parent is experiencing delusions, be patient and supportive. Rather than challenging their perception of reality, acknowledge it and try to redirect their thinking. For example, if your parent is paranoid that their caregiver has stolen a piece of jewelry from them, don’t jump to say, “how dare you accuse her of something like that!” or “that’s ridiculous.” Instead, tell them that you’re sorry their jewelry is missing and offer to help them find it.

Similarly, if your parent believes a lost loved one is still alive, ask her questions about the person instead of shutting her down.

In Learning to Speak Alzheimer’s, author Joanne Koenig Coste tells a story in which her husband is scrubbing the Teflon off a frying pan. She congratulates him for doing a good job, instead of telling him that he’s ruining the pan. To tell him that he ruined the pan, would lead nowhere except for frustration and upset feelings. By congratulating him, she redirected his feelings in that moment and turned a situation positive, ensuring his feelings of safety.

The frying pan story is also a great example of letting your loved one do something for himself. If your father wants to help with the dishes, let him. Don’t say that you can do it faster or more efficiently. Even if it means you have to do the dishes all over again when he’s no longer present, letting him feel helpful is enormously important for his feelings of self-esteem and independence.

When it comes to helping your parent with her mood swings, you can take preventative measures to ensure that she isn’t put in uncomfortable or exhausting situations. Dementia patients can become impatient quickly, due to their shortened attention spans. So, don’t put them in situations where they need to be patient. If you’re going to bathe them, for instance, don’t tell them it’s time for a bath until their bath is drawn and ready to go. Don’t tell them it’s time to go to the doctor until it really is time to go to the doctor.

Of course, this doesn’t mean you shouldn’t prepare them for what to expect each day. You can let your parent know they have a doctor appointment that day, and you should, to avoid any unnecessary stress or surprise. It simply means that when it’s time to go, don’t make them wait to get into the car and get to the appointment.

You can also help your parent feel calmer by avoiding over stimulation. While it’s important to include family members in events so they don’t feel left out or forgotten, avoid loud or crowded gatherings that might be overwhelming. During the holidays, for example, you could aim for small gatherings or provide a quiet room for your parent to escape to. Avoid turning on the TV while your parent is trying to have a conversation.

A 2003 study by researchers at the Karolinska Institute found that music positively effects dementia patients, even in later stages of the disease. The study is explained in The Harvard Health Letter, which says that when listening to music, patients “sat up straighter, their movements became stronger and more regular, and their awareness improved.” Amazingly, even more effective than playing music was singing songs. When caregivers sang to their patients, their mobile and cognitive abilities actually improved. Singing brings a sense of calm and positivity to the patient, and therefore improves their overall move and cognitions.

Finally, try your best not to treat your loved one differently. I know this can be tough, especially on the days when your parent feels unfamiliar or incredibly difficult to communicate with. Of course, you will have to treat your parent a little bit differently no matter what, since you can’t engage in conversation like you once could and will need to be extra patient with them. But in this sense, not treating them differently simply means to treat them with respect and kindness.

If there’s another person present on a visit, don’t talk about your parent in front of them, as though they’re not there. Include them in your conversation. In addition, try not to speak down to them like they are a child. This is a person who has lived a full life, not a toddler who is learning to speak. Finally, allow them to make their own choices whenever possible.

It can be devastating to learn that your loved one has dementia, but when you know what to expect, you can prepare yourself to be more patient, kinder, and more understanding. Always lead with empathy first and never make your parent feel alone in his or her struggle.

We have seen countless families that have been touched by this disease and what may work for one family may not work for another. But, there is one common thread for every family and loved one that is facing dementia and that is everyone deserves to be treated with respect, dignity, and love.

When you help your loved one to feel safe, loved, and supported, you are giving her the strength to face what’s ahead.

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.

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Sources:

https://www.bps.org.uk/sites/www.bps.org.uk/files/Policy/Policy%20-%20Files/Evidence%20Briefing%20-%20Emotional%20and%20Psychological%20Needs%20in%20Advanced%20Dementia.pdf

 

https://edisonhhc.com/coping-with-emotional-aspects-of-dementia/

 

https://www.health.harvard.edu/newsletter_article/the-emotional-side-of-alzheimers-disease

 

https://www.weatherlyinn.com/blog/how-to-support-a-loved-one-with-early-dementia

 

https://www.alzheimers.org.uk/get-support/help-dementia-care/understanding-supporting-person-dementia

 

https://autumnleaves.com/5-simple-ways-help-someone-dementia-short-long-term/

 

https://www.alz.org/media/documents/alzheimers-dementia-care-10-ways-to-help-a-family-c.pdf

 

https://www.alzheimers.net/caring-for-someone-with-dementia/

 

https://www.helpguide.org/articles/alzheimers-dementia-aging/tips-for-alzheimers-caregivers.htm

 

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

 

https://www.alz.org/help-support/caregiving/stages-behaviors/depression