Caregiving And Loving Someone With Dementia
Over 16 million people in the United States alone care for someone with Alzheimers or dementia. While the caregiving journey can be rewarding, it is no secret that it can also be overwhelmingly challenging.
As the disease progresses, it becomes easier to forget that your loved one is still present. Many caregivers are frustrated by their loved ones inability to communicate their thoughts and their inability to remember faces and names. The disease eventually takes away independence so that caregivers become the feet, hands and mind of people struggling with dementia.
Many people who have the disease struggle with depression and some can become violent, further increasing frustration for caregivers. But, despite all these challenges, if you care for and love someone with dementia, it can be extremely rewarding and although it may not be obvious, your loved one is still there, behind the disease.
Expect To Hear The Same Things Again And Again
My experience has been that those with dementia often have a few stories they like to retell or remember. I know that whenever we drive by a particular church, my aunt will tell me about the funeral with the ladies in red hats. When we go by the funeral home, Ill hear about a conversation she had with the director.
Whenever possible, I dont interrupt. Instead, I listen as though Ive never heard the story before. If I absolutely cant bear to hear it again, I might jump in with an Oh, I think you may have mentioned this. Is this when and fill in the blank. But mostly, I simply listen. Letting them tell their favorite stories makes the conversation more enjoyable for both of us.
Be Sensitive In Your Use Of Language Don’t Label People
- ‘I can’t say it enough, if you’ve met one person with dementia, you’ve met one person with dementia – we’re all different.’
- ‘… sometimes you have to be able to say how you are feeling. I do suffer. My family suffers more than me, but I also adapt my life to live with my dementia. It’s not that the word ‘suffering’ itself is always wrong – its using it to label people thats wrong.’
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What To Avoid Saying To Someone With Dementia
You may well be worried about saying the wrong thing, but there are a few tips you can try, to avoid causing upset. If you’re not sure how to approach a topic or conversation, check with your loved one to see what best helps them. Don’t make assumptions.
But there are a few general rules about what you shouldn’t say, according to Helen Foster, director of operations at Alzheimer’s Society, particularly as your loved one’s condition becomes more pronounced.
Have A Plan For The Kids
Expecting your children, especially young ones, to sit through a visit with an older relative may be asking too much. People with dementia often lose their filters which can make for awkward conversations around little ones. Plus, children can be distracting to your relative and may make it difficult for them to focus on you.
Instead of requiring children to spend the entire visit attentive to the conversation, bring along something to occupy their time. They may be able to watch a movie on an iPad or work on homework while you talk to your loved one.
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Im Sorry But Its Your Responsibility
I know you already carry the largest load of all. I know you believe others just dont care. But educating others is your duty. Without knowledge, we are ignorant and ignorance breeds fear. Educating wont help everyone understand because a lot of people just dont give a hoot. But before you write people off, you have to at least try. Please give me the benefit of the doubt at least initially. You of all people know how complicated this disease is every minute of every day. Educate me and lets change the world together.
The student becomes the teacher
God bless you.
Letter Writing And Dementia
MIL has always been an avid letter writer. It was her main mode of communication with out of state friends and family. She is now in the mid to end stage of dementia. When speaking with her she repeats herself constantly. We found out from some recipients of her letters that she also repeats whole sentences in her notes & letters. She also sends multiple letters to the same people, repeating her messages, almost word for word. She goes through a book of stamps every two weeks or less. We stopped buying rolls of stamps because she lost the first one the day after we purchased it. Anyway, I thought this was an interesting but none the less sad symptom of this disease.
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Getting Lost Outside The Home
A person with dementia may want to leave the house for any number of reasons. These could include exercising or going to the shops. This type of activity can help the person maintain some independence and boost their wellbeing.
Such a trip may involve the person taking familiar routes or heading towards an area that they know well. Despite this, a person with dementia may set off somewhere and then forget where they were going or why. They may also have problems recognising their environment and this can lead to them getting lost or coming to harm. This can be distressing for the person and for their carer.
For more advice on managing the risks of a person with dementia getting lost outside the home see Walking about.
It can be especially worrying if the person gets lost while driving. If this is the case, the person with dementia may have to stop driving, or you may need to look at ways to manage this, such as only driving with another person in the car.
Leave Your Medications In Plain View
- Leave your medications in a place you frequent, or a place that will act as a visual reminder for you to take them.
- For example, if you make coffee in the morning, leave your morning medications by the coffee machine. If you live with children, or if you have children visiting frequently, put the medications in a place where they cannot reach them.
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Btw Your Loved One Looks Ok To Me
I just had a conversation with your loved one. They were telling me about their days as a youth. How neat. Theyre just reminiscing, arent they? I do that too. Theres nothing wrong with them. What am I missing? You have to educate me. If you dont, youre not helping eliminate the misunderstanding and stigma surrounding cognitive impairment.
All About Me A Conversation Starter
Sometimes all people need is a âsnapshotâ of you in order to start a conversation. At just three pages long, All about me â a conversation starter is a shorter booklet that focuses on your needs, likes, dislikes and interests.
Whether you’re completing the full booklet or the conversation starter, always keep in mind the main purpose: To give as clear a picture as possible of you. This will help others provide care when you, and others who support you, are unable to.
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The Letters Of Love And Dementia
The Letters of Love and Dementia Campaign emerged from a Celebrate Ageing film called Our Hearts Are Bigger, which shows Anne Tudor and Edie Mayhew opening and reading letters they wrote to each other every day for a week. The film is part of a series documenting Edies journey with Younger Onset Dementia and Anne and Edies approach to deepening their relationship . The film invites family members, friends and service providers to write a letter to someone with dementia as a way of acknowledging the human experience of dementia.
The Letters of Love and Dementia Campaign was launched in November 2016 in Ballarat, Victoria. The self-funded Campaign launch included the film and a call out for people to join the Campaign by writing a letter to someone with dementia. On this webpage you will find the film, images from the Campaign launch and letters shared by people from around the world.
In February 2017 a Letters of Love and Dementia Toolkit will be launched at the National Dementia and Love Symposium . The Toolkit will assist service providers and community members to set up their own Letters of Love and Dementia project.
Dont Ask A Person With Short
A patient and/or loved one can construe even the simplest of conversation starters as a real question, but they honestly dont know the answer to it. This can be embarrassing and can send them back into a fogthey try their best to give an answer that makes sense to them and often produce immediate physical concerns: I’m having a lot of pain, for example. A caregiver and/or family member might ask, What did you have for breakfast? and the person with memory loss doesn’t remember at all. They might say earnestly, I haven’t had anything to eat for weeks, . So these are questions to avoid because it causes fear for the person, that they have failed. But there things you can talk about
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Play To Their Strengths
Sometimes memory loss is so devastating that we all forget that there is a person still in there somewhere. Family members can be distraught by what’s missing and forget that there’s still a lot there within the person, and that they have strengths.
They still have long-term memory, so its up to the caregiver and/or family member to find them. It’s interesting that, medically, doctors do tests on other conditions but when it comes to memory loss, it’s often looked at like a switch: Either they got it, or they don’t. Just like everything else, there’s a progression of memory loss, and its up to the caregiver and/or family member to find out where the patient and/or loved one is, and bolster that.
Strength #1: Long-term memory & stories
Everyone has a short-term memory drawer and long-term memory drawer, and we put information in each. People with dementia and/or Alzheimers have a short-term memory drawer that has no bottom. He/she puts things in, and then they get lost. The long-term memory drawer, however, has a solid bottom. Lots of stories that are retrievable await . Encourage your patients and/or loved ones to tell you stories. You can even use photos to encourage stories. Photos are wonderful long-term memory reminders.
Strength #2: Humor & music
Strength #3: Spirituality
If He Or She Doesn’t Recognise Their Environment As ‘home’ At That Moment Then For That Moment It Isn’t Home
Try this instead:
Try to understand and acknowledge the feelings behind the wish to go home. Find out where ‘home’ is for them – it might not be the last place they lived. It could be where they lived before moving recently or it could be somewhere from their distant past.
Often people with dementia describe ‘home’ as a pleasant, peaceful or idyllic place where they were happy. They could be encouraged to talk about why they were happy there. This can give an idea as to what they might need to feel better.
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Break Up Blocks Of Text Using Bullets Bold And White Space
Chunking can make information easier to process. It helps most people. It can be particularly helpful for people with short-term memory difficulties.
- ‘I hate it when people try to squash everything on to one page. I find it much easier when they leave white space, put titles in bold, separate sentences out and use bullet points.’
Caring For Patients With Alzheimer’s Disease
Caring for patients with Alzheimers disease is a difficult job, but someone has to care for these unfortunate people. It takes a lot of love and compassion to care for patients with this disease. There is a certain type of knowledge and understanding to work with patients with this disease and it requires someone willing to learn and help care for patients that have it. In the long run, some patients may experience a prolonged and happier life with the right type of interventions in place.
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Keep Belongings In One Place
- Although this may not be an easy thing to do, making the effort of keeping your belongings in one place may save you time looking for them and may reduce confusion.
- For example, keep your most used cooking utensils in one drawer and put your reading glasses on your night table when you are done using them.
Dont Infantilize The Person
Dont talk down to the person or treat them like an infant. This is sometimes called “elderspeak” and it’s got to go.
Have you ever observed how people talk to babies? They might use a high pitched tone and get close to the babys face. While this is appropriate for infants, its not fitting for communicating with adults. Regardless of how much the person with dementia can or cannot understand, treat them with honor and use a respectful tone of voice.
The Alzheimers And Dementia Care Journey
Caring for someone with Alzheimers disease or another type of dementia can be a long, stressful, and intensely emotional journey. But youre not alone. In the United States, there are more than 16 million people caring for someone with dementia, and many millions more around the world. As there is currently no cure for Alzheimers or dementia, it is often your caregiving and support that makes the biggest difference to your loved ones quality of life. That is a remarkable gift.
However, caregiving can also become all-consuming. As your loved ones cognitive, physical, and functional abilities gradually diminish over time, its easy to become overwhelmed, disheartened, and neglect your own health and well-being. The burden of caregiving can put you at increased risk for significant health problems and many dementia caregivers experience depression, high levels of stress, or even burnout. And nearly all Alzheimers or dementia caregivers at some time experience sadness, anxiety, loneliness, and exhaustion. Seeking help and support along the way is not a luxury its a necessity.
Just as each individual with Alzheimers disease or dementia progresses differently, so too can the caregiving experience vary widely from person to person. However, there are strategies that can aid you as a caregiver and help make your caregiving journey as rewarding as it is challenging.
Tips For Caregivers And Families Of People With Dementia
On this page
A caregiver, sometimes referred to as a caretaker, refers to anyone who provides care for another person. Millions of people living in the United States take care of a friend or family member with Alzheimers disease or a related dementia. Sometimes caregivers live with the person or nearby, other times they live far away. For many families, caring for a person with dementia isnt just one persons job, but the role of many people who share tasks and responsibilities. No matter what kind of caregiver you are, taking care of another person can be overwhelming at times. These tips and suggestions may help with everyday care and tasks.
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Should You Tell The Person They Have Alzheimer’s
Families may frequently ask, Should I tell the person that he/she has Alzheimer’s? Keep in mind that the patient and/or loved one can’t reason. They don’t have enough memory to remember the question, then think it through to form a conclusion. Caregivers and/or family members may often think if they tell the person with memory loss that he/she has Alzheimer’s, then he/she will understand and cooperate. You cant get cooperation by explaining that he/she has the disease and expect him/her to remember and use that information.
An Open Letter To Those Caring For A Loved One With Dementia
This article is part of the Open Letters series.
Taking responsibility for the care of a person suffering from any stage of dementia can be one of the greatest challenges of life. But there are not only challenges. There are also opportunities opportunities to serve unselfishly in the way our Lord serves us, opportunities for personal growth, and opportunities for God to be glorified.
Caring for someone with dementia may cause you to pray and depend on the Lord in a way you haven’t done before.
Among the challenges is loving and caring for one we have loved for many years but whose personality has now changed so dramatically. Another challenge is having to be available 24/7 without sufficient time for refreshment and renewal. Caring for one with dementia has the potential to bring out the worst in the caregiver, revealing an aspect of themselves that needs Gods transforming power. No wonder nearly 50% of caregivers experience severe depression.
I would like to suggest several things to you.
Learn as much as possible about the particular form of dementia you are dealing with.
There are many resources available. Reading my book Finding Grace in the Face of Dementia may help. Go online and look at some of the resources available through the Alzheimers Association or meet with one of their support groups in your community.
Recognize and provide for your own needs to maintain your physical health, emotional stability, and relationship with God.
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