Living With: A Family Member With Dementia
Dementia is a disease that can bring grief to a family if it isnt handled correctly. There are so many myths circulating about the illness, and many people do not understand that dementia is a manageable condition. In fact, many families living with a dementia patient can find some peace and a little stability. It just takes a clear understanding of what dementia is and how it can be managed.
First, everyone must realize the dementia is a symptom of another, more complex disease or disorder. It isnt contagious and you cant just come down with it like a cold.There is always something else that leads to the dementia.
These conditions include:
- Narrowing blood vessels
- Head injuries
- Kidney disease
- Liver disease
Some of these conditions only cause a temporary form of dementia that can be overcome with physical therapy, medication and time. Other forms of dementia are degenerative, so they get worse as the years go on. If your loved one suffers from the latter versions, it is best to make their time with you as enjoyable as possible. To do so, you may have to accommodate the dementia sufferer while the disease is still manageable.
Where To Get Help
- Your local community health centre
- National Dementia Helpline Dementia Australia Tel. 1800 100 500
- Aged Care Assessment Services Tel. 1300 135 090
- My Aged Care 1800 200 422
- Cognitive Dementia and Memory Service clinics Tel. 1300 135 090
- Carers Victoria Tel. 1800 242 636
- Commonwealth Carelink and Respite Centres Australian Government Tel. 1800 052 222
- Dementia Behaviour Management Advisory Service Tel. 1800 699 799 for 24-hour telephone advice for carers and care workers
What To Do If A Loved One Is Suspicious Of Having Dementia
- Discuss with loved one. Talk about seeing a medical provider about the observed changes soon. Talk about the issue of driving and always carrying an ID.
- Medical assessment. Be with a provider that you are comfortable with. Ask about the Medicare Annual Wellness exam.
- Family Meeting. Start planning, and gather documents like the Health Care Directive, Durable Power of Attorney for Health Care, Estate Plan.
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It May Feel Like The First Time For The Person With Dementia
Short-term memory loss in a person with dementia can prove challenging for family and friends and when providing care and support. While you may see the person several times during a day, each visit may feel like the first for them. This can have a great impact on a conversation, so consider how you would respond. The best approach for a care worker in these circumstances may be to introduce yourself on each visit and explain why you are there.
Dementia May Even Alter Someones Perception Of Time
Alzheimers and dementia dont just alter how patients see rooms and words, it can even change how they perceive day and night. A normal sunny morning on the patio can be just as confusing as the disorganized kitchen.
On the dementia patients patio, the dark sky reveals why people with the disease mix up their days and nights. Although there are clear signs its daytime in both pictures, an Alzheimers patients may confuse 4am for 4pm and vice versa.
The slippers again show how items can become easily misplaced. While it may have made sense to put them there at one time, it may not be the right place later on. The same memory issues create tripping and falling hazards in the dementia patients garden. Dangerous tools and garden hoses left out due to failing memory can injure seniors long after they stopped using them.
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Know The Signs Of Dementia
Early diagnosis can help people with dementia plan for the future, and might mean they can access interventions that help slow down the disease. Being familiar with the signs of dementia can help people receive a diagnosis as early as possible.
Early signs that a person might have dementia can include:
- being vague in everyday conversations
- memory loss that affects day-to-day function
- short term memory loss
- difficulty performing everyday tasks and taking longer to do routine tasks
- losing enthusiasm or interest in regular activities
- difficulties in thinking or saying the right words
- changes in personality or behaviour
- finding it difficult to follow instructions
- finding it difficult to follow stories
- increased emotional unpredictability.
Can Dementia Be Prevented
Although dementia cannot be prevented, living a health-focused life might influence risk factors for certain types of dementia. Keeping blood vessels clear of cholesterol buildup, maintaining normal blood pressure, controlling blood sugar, staying at a healthy weight basically, staying as healthy as one can can keep the brain fueled with the oxygen and nutrients it needs to function at its highest possible level. Specific healthful steps you can take include:
- Follow a Mediterranean diet, which is one filled with whole grains, vegetables, fruits, fish and shellfish, nuts, beans, olive oil and only limited amounts of red meats.
- Exercise. Get at least 30 minutes of exercise most days of the week.
- Keep your brain engaged. Solve puzzles, play word games, and try other mentally stimulating activities. These activities may delay the start of dementia.
- Stay socially active. Interact with people discuss current events keep your mind, heart, and soul engaged.
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What Does It Feel Like To Have Dementia
Caring for someone living with dementia isnt always easy it can be frustrating, overwhelming and even, at times, frightening.
Though every case of dementia is different, the changes that take place in a persons brain when they have dementia can have a range of effects, including apathy, depression, sadness, anger, agitation, confusion, or even aggression.
Dementia also changes a persons senses, their hearing, sight, taste, smell and sense of touch.
Some of the challenges you may be experiencing caring for a person living with dementia may be caused by the deterioration of their sensory system and lead to poor communication.
If we can acknowledge the changing sensory abilities of someone living with dementia, understand the level of their sensory awareness and therefore their capabilities, we are in a better position to be able to support and care for the person in a way that works with their limitations and meets their needs.
Remember That He Really Can’t Control His Behavior
When your family member or friend has dementia, it’s tempting to believe that they’re really not that bad off. This can be a protective tendency so that you don’t have to directly face the changes that dementia is making in your loved one’s life.
Sometimes, caregivers would almost prefer to believe that a loved one is being stubborn, rather than the fact that they have dementia. The problem with that belief is that then, it’s very easy to feel that they’re choosing to dig their heels in and just being difficult You may feel like they have “selective memory problems” or that they’re just trying to provoke you or make your day difficult by not getting dressed to go to a doctor’s appointment, for example.
Instead, remind yourself that dementia can affect personality, behavior, decision-making, and judgment. They’re not just being stubborn or manipulative they also have a disease that can sometimes control his behavior and emotions. This perspective can make it feel a little less personal when the day is not going well.
Difficulty Completing Normal Tasks
A subtle shift in the ability to complete normal tasks may indicate that someone has early dementia. This usually starts with difficulty doing more complex tasks like balancing a checkbook or playing games that have a lot of rules.
Along with the struggle to complete familiar tasks, they may struggle to learn how to do new things or follow new routines.
Delusions Hallucinations And Paranoia
You might find your loved one, who used to be a nurse, having a delusion that theyre working at the doctors office instead of being present for their own appointment. You may find them talking to no one while they are experiencing a hallucination of talking to a deceased loved one. You could also discover they have become increasingly paranoid of the good intentions of medical staff or family. To your loved one, these experiences feel real because of the changes happening in their brains, as noted by Susan M. Maxiner, a doctor at the University of Michigan School of Medicine.
The aging mind, as its neurons deteriorate, attempts to create stability by filling in holes in memories with a guess of what was once there. An incomplete memory of working in a doctors office decades ago, coupled with actually being in the doctors office for a checkup today, may result in a delusion or hallucination. Your loved ones mind may fill in past coworkers or patients, and they may try to engage those individuals. If your loved one repeatedly sees people who are not there and is continually told those people are not in fact present, your loved one may begin experiencing paranoia.
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Choose One Small Thing To Do For Yourself
The risk of caregiver burnout is real. Caregivers don’t need to feel guilty or frustrated because they don’t have time or energy to exercise, smile, eat right, and get lots of sleep. Most caregivers are well aware these are things they should do but just don’t have the time. The last thing they need is another list of things they should be doing.
Instead, what caregivers need to remember is that doing even one little thing for themselves is important and beneficial. You may not have time to do the big things, but finding little ways to refill your tank of caregiver energy is critically important.
Practical ideas from dementia caregivers who have been there include a 30-minute visit from a friend, 20 minutes of quiet time where you read a religious passage or listen to your favorite music, 10 minutes to drink your favorite flavored coffee, five minutes of locking yourself in your room to physically stretch your body or call a family member who will understand, and 10 seconds of taking a deep, deep breath and let it out slowly.
Talking With A Doctor
After considering the persons symptoms and ordering screening tests, the doctor may offer a preliminary diagnosis or refer the person to a Cognitive Dementia and Memory Service clinic, neurologist, geriatrician or psychiatrist.Some people may be resistant to the idea of visiting a doctor. In some cases, people do not realise, or else they deny, that there is anything wrong with them. This can be due to the brain changes of dementia that interfere with the ability to recognise or appreciate the changes occurring. Others have an insight of the changes, but may be afraid of having their fears confirmed.One of the most effective ways to overcome this problem is to find another reason for a visit to the doctor. Perhaps suggest a check-up for a symptom that the person is willing to acknowledge, such as blood pressure, or suggest a review of a long-term condition or medication.Another way is to suggest that it is time for both of you to have a physical check-up. Any expressed anxiety by the person is an excellent opportunity to suggest a visit to the doctor. Be sure to provide a lot of reassurance. A calm, caring attitude at this time can help overcome the person’s very real worries and fears.Sometimes, your friend or family member may refuse to visit the doctor to ask about their symptoms. You can take a number of actions to get support including:
- talking with other carers who may have had to deal with similar situations
- contacting your local Aged Care Assessment Team
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Quality Of Life Is Not Impossible In Dementia
Coping with a diagnosis of dementia is often not easy. There are losses to grieve, changes to make and many things to learn. However, you don’t need to fall for the lie that life will always be terrible with dementia. This is just not true.
Instead, listen to others who’ve been there, who acknowledge the challenges and don’t deny the pain, but who also strive to continue to enjoy life. According to many people who are living with dementia, there are ways to still enjoy life, to still have a high quality of life, despite their challenges. Take hope from their words when they say that they still enjoy socialization with friends, good food, pet therapy, and laughter.
Phases Of The Condition
Some of the features of dementia are commonly classified into three stages or phases. It is important to remember that not all of these features will be present in every person, nor will every person go through every stage. However, it remains a useful description of the general progression of dementia.
- Early Dementia
- Advanced Dementia
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How Is Dementia Diagnosed
To diagnose dementia, doctors first assess whether a person has an underlying, potentially treatable, condition that may relate to cognitive difficulties. A physical exam to measure blood pressure and other vital signs, as well as laboratory tests of blood and other fluids to check levels of various chemicals, hormones, and vitamins, can help uncover or rule out possible causes of symptoms.
A review of a persons medical and family history can provide important clues about risk for dementia. Typical questions might include asking about whether dementia runs in the family, how and when symptoms began, changes in behavior and personality, and if the person is taking certain medications that might cause or worsen symptoms.
The following procedures also may be used to diagnose dementia:
Early detection of symptoms is important, as some causes can be treated. However, in many cases, the cause of dementia is unknown and cannot be treated. Still, obtaining an early diagnosis can help with managing the condition and planning ahead.
Stage : Mild Dementia
At this stage, individuals may start to become socially withdrawn and show changes in personality and mood. Denial of symptoms as a defense mechanism is commonly seen in stage 4. Behaviors to look for include:
- Difficulty remembering things about one’s personal history
- Difficulty recognizing faces and people
In stage 4 dementia, individuals have no trouble recognizing familiar faces or traveling to familiar locations. However, patients in this stage will often avoid challenging situations in order to hide symptoms or prevent stress or anxiety.
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Dementia Live Teaches Empathy
Lynne Gardner is one of AGE-u-cates Dementia Live master trainers who teach professional carers of people living with dementia how to run the experience, as well as providing the experience for families caring for loved ones with dementia at home.
The thing that struck me when I first did the course was, wow, this looks like it can actually teach empathy, said Ms Gardner
I always thought empathy was an innate ability that came from within, but when youre doing Dementia Live, you do experience what its like to have sensory deficits.
Its very, very difficult to do even simple, everyday tasks when you cant feel, see or hear properly, she said.
How To Detect Early Signs Of Alzheimer’s
Some 5.8 million Americans are living with Alzheimer’s, the most common type of dementia. The puzzles are meant to replicate what they go through.
The humiliation of not being able to complete a simple task leads to anger, for example. Theres also fear and stress because failing such tests could lead to job loss or a confiscated drivers license. People might lash out because no matter how hard they try, they feel like a failure. Depression is a common outcome, the project explains.
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Michael: Caring For Someone With Dementia
Teacher Michael Fassio cared for his Italian-born mother Renza through the progressive stages of dementia from 2001 until her death in 2008.
At first I didnt face up to the fact that Mum had dementia. I thought of it as forgetful and scatty. I did notice she used the weekly television guide as a calendar to mark when I was going to visit, even though I went on the same day. But she went shopping as usual, and still cycled. She was 75.
But a neighbour later told me that sometimes she got very upset with herself for being forgetful. Then one day she got lost when cycling locally. My sister, whos a nurse, realised what was happening and tried to tell me.
Living with mum
Twelve months later, however, Michael was finding it hard to cope and still finds that time difficult to talk about. Mum became irrational and would hallucinate and get terribly upset. I remember saying Dont worry, Ill be your memory but I also had to pacify her when she thought she saw people in the garden.
This passed but Renza also stopped speaking English and reverted to the Italian of her childhood.
Increase in demands
Renza became ever more childlike. Even if given to dramatic explosions of Italian temper that Michael laughingly likens to a performance by Sophia Loren. He even managed to fulfill her dream of a visit to her sister in Italy. Not that easy because, although you can ask for assistance with travel, people with dementia hold no truck with timetables!
How To Finish The Conversation
Just as you prepared to start a conversation, so you must think about how you will bring it to a close. If you are leaving the persons home, make sure you say goodbye. You should not leave the person thinking you are still in their home, perhaps in another room. This may cause confusion or anxiety.
Ensure you have their attention, smile, and let them know you enjoyed your time together and the conversation. Shaking their hand or touching them is a common gesture which gives them a strong clue you are leaving. Leave them reassured and let them know you look forward to talking again. If you are likely to be speaking to them very soon, for example later that day, say when you will return and leave a note close by indicating when the next visit will be.
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