If you are the oldest daughter living in the same city as an aging parent, the chances are very high that your family will expect you to be the primary caregiver, or to at least coordinate caregiving efforts. I am the oldest of 9 siblings and the oldest of the 3 daughters in my family, and yet for more than 10 years, until he passed away on Jan. 4, 2017, I had to struggle to get family to help with caring for my dad. Four of my siblings, a sister and 3 brothers, lived 5 or more hours away from dad. They all said they “wished” they could do more, but I saw very few responses to my suggestion of making phone calls or sending letters, if only to let Dad know they were thinking about him or to give him more social interaction. A sister who lived nearby felt estranged from Dad and would do nothing. Two brothers were willing to pay Dad a visit once a week. When she retired, a sister-in-law (brother deceased), helped more than all of my other siblings combined.
A Common Experience
Unfortunately, my experience is not unusual. A new Alzheimer’s Association survey reveals that almost all agree (91%) that caregiving should be a group effort, yet two in three caregivers feel alone. “American families are unprepared to face the looming Alzheimer’s caregiving, financial crisis [and a] lack of appreciation and support stress family relationships, especially among siblings.”
Far too many caregivers are doing it alone. Two out of three caregivers (64%) felt isolated or alone in their situation, and more than four in five caregivers (84%) would have liked more support with caregiving tasks, particularly from their family.
The No. 1 reason people said they did not help with providing care for someone with Alzheimer’s or another form of dementia was they felt as though another family member had already taken on the responsibility (74%), followed by their not living in the same area (62%).
The Importance of Planning Ahead
“There are currently 15 million Americans providing unpaid care for someone with Alzheimer’s or dementia, and this survey shows that we must alleviate the weight on the shoulders of these individuals,” said Ruth Drew, Director of Family and Information Services for the Alzheimer’s Association. She stressed the importance of planning for the devastating toll this disease may have on people and their families. Survey respondents were less likely (20%) to have discussed their wishes with a spouse or other family member than they were to have made financial plans (24%). A lack of communication can contribute to family tensions, but it’s also something that can be improved upon.
The university neurological center that diagnosed my husband with Alzheimer’s has provided some valuable family support that other families could duplicate. They arranged for my husband and I and our 5 grown children to meet with a social worker. The purpose was two-fold: to educate our children about the disease and its possible progression, and to help us plan as a group for the types of assistance both my husband I might need from them. We also discussed what the children would have to do for their dad if I were to die first. They recommended and we held a follow-up meeting at home to discuss what was learned and what steps would need to be taken when and by whom. Everyone reported feeling relieved to know that we are all on the same page and willing to do what we can to help when more help is needed. We also shared information about our financial situation.
Strength vs. Strain
Findings from the survey show that in some families, Alzheimer’s caregiving enhances family strength and support, while in others, it can tear relationships apart. Relationships between siblings were found most likely to be strained, caused by the feeling of not having enough support in providing care (61%) along with the overall burden of caregiving (53%). Among all caregivers who experienced strain in their relationships, many felt like their efforts were undervalued by their family (43%) or the person with the disease (41%). Conversely, 35% of survey respondents said caregiving strengthened their relationships with other family members, with two out of three of these reporting that they felt like the experience gave them a better perspective on life.
Relationships between spouses/partners were strengthened the most from the experience, with 81% believing that “being emotionally there for each other” was a source of strength they drew upon for caregiving. “Having the support of family is everything when you’re dealt a devastating diagnosis such as Alzheimer’s,” said, a Forked River, New Jersey, resident who has been living with younger-onset Alzheimer’s for two years. “My wife, has been my rock as we navigate the challenges of Alzheimer’s. It’s easy to want to shut down following a diagnosis, but that’s the time when communication within families is needed most.”
Whether you are in the process of caring with a family member with Alzheimer’s or simply wondering whether the disease will strike your family, it’s never too soon or too late to recognize the need to plan for and give family support. In addition to help from family members, home health care organizations like Dakota Home Care can ease the stress of caring for a loved one with dementia. Call us today at 701-663-5373 for a free assessment of what we can do to help.
Resources for Families
The Alzheimer’s Association can help people learn how to navigate changes in their relationships with family members and friends. In addition to its 24/7 Helpline (800-272-3900), the Association offers various resources for families including:
- A new Alzheimer’s Association infographic, offering specific tips to help families resolve conflicts and cope with Alzheimer’s together
- Guidance on financial and legal planning for Alzheimer’s
- Tips on long-distance caregiving and care coordination to help families better manage caregiver responsibilities
- A video series, featuring insights from people living with the disease on how to navigate the personal and emotional challenges that accompany an Alzheimer’s diagnosis
- A community resource finder that helps families connect with local resources by simply entering their zip code
When you or a loved one can no longer drive or move around outside the home safely, a myriad of challenges present themselves. Who will do the shopping or go to the pharmacy? How will I visit my friends or enjoy an evening out? How can I keep my Doctor, hair or other appointments?
Dakota Home Care is pleased to announce that we now offer Courier and Transportation Services throughout the Bismarck/Mandan area as another way to “Help keep home an option.”
Our Courier Service will do your shopping and runs other errands for you or your loved ones, delivering them right to your door. Examples include grocery, birthday or Christmas shopping; trips to the pharmacy, taking clothes to the cleaners or running other errands.
Our Companion Transportation Service provides door to door service to and from your home for shopping, Dr. appointments, or other errands as needed. Visits with family, lunch with a friend or an evening out are available. Our drivers are able to assist passengers with outings such as grocery shopping with bagging and delivery back to your home.
Seniors in the Bismarck/Mandan area can now enjoy the independence and freedom of carefree transportation or have supplies and gifts picked up and delivered to their doors. Services are available Monday through Saturday from 8:00 AM to 5:00 PM, or evenings upon request. Rates are by the hour or half-hour. To make reservations, call Dakota Home Care at 701.663.5363
Dakota Home Care is licensed by the ND State Health Department. We are locally owned and operated. Contact us at 701.663.5373 for a free consultation regarding any of our quality healthcare services.
”Dementia is not a condition that’s ever going to be such that a single drug can be considered a cure for the illness,” said Professor Lon Schneider, co-author of the Lancet Report presented at the 2017 Alzheimer’s Assoc. International Conference. Alzheimer’s is now thought to be a disease like Cancer or heart disease, which also can’t be prevented or cured by a single drug. Thus, over the past decade, scientists and doctors are increasingly studying and testing the results of how controllable lifestyle changes made early in life, before the onset of the disease, or even after a person diagnosed with Alzheimer’s could affect the severity and progression of any type of dementia.
The Lancet Report also boldly claimed that “up to one-third of the world’s dementia cases could be prevented by certain lifestyle changes.” The report has met with some opposition, but it surely can’t hurt to be aware of the findings and to try to attempt as many of the changes as we and/or our loved ones are able to make. Professor Schneider added: “The potential magnitude of the effect on dementia of reducing these risk factors is larger than we could ever imagine the effect that current, experimental medications could have. Mitigating risk factors provides us a powerful way to reduce the global burden of dementia.”
Nine Lifestyle Risk Factors
The report identifies nine lifestyle risk factors for Alzheimer’s over a person’s life span that can have an accumulating effect, including:
- Childhood before Age 15: years of education
- Middle Age: hypertension, hearing loss and obesity
- Late Life: a smoking, depression, physical inactivity, social isolation and diabetes
The Lancet team considered each factor separately and also looked at how they related to one another to calculate how much modification of each could potentially affect a person’s dementia risk. Only by modifying all nine factors could the risk be reduced by 35 percent.
Dr. Doug Brown, director of research at the charity Alzheimer’s Society, said: “The revelation that over a third of dementia cases worldwide are, in theory, entirely preventable is cause for celebration. But to achieve even close to this kind of reduction in cases we need to consider two important challenges – firstly how risk factors like education, obesity and depression apply not just at a population level, but to individual people who all have their own unique genetic risk profiles, and secondly how we can motivate people in mid to late life to change their behavior and adopt healthier lifestyle choices.”
Dr. Brown points out not all of the nine risk factors identified are easily modifiable:
- Difficult to change: poor education and social isolation
- Easier to improve: cardiovascular factors like lowering blood pressure and not smoking
- Need for further study: links between hearing loss and dementia not really known
- Healthy habits: difficult to motivate people to make healthier choices, like a better diet and more exercise, as measures they can take to reduce the risk of dementia
He added: “While this report rightly highlights measures we can take to reduce our risk of dementia, it also serves as a reminder that even if every risk factor identified here could be eliminated, we do not yet have a surefire way to prevent dementia. Alongside prevention research, we must continue to invest in research to find a life-changing treatment for people with this devastating condition.”
At the same conference, A report by the National Academies of Sciences, Engineering and Medicine took a more cautious approach to the effects of lifestyle modification. Its testing methods found that just three types of intervention offered “encouraging but inconclusive” evidence:
- Cognitive training,
- Blood pressure management for hypertension
- Increased physical exercise.
2016 Alzheimer’s Conference
Lifestyle choices that were considered at the 2016 Alzheimer’s Conference included:
- Work that involves complex thinking
- Interaction with other people
Both seem to help protect against the onset of Alzheimer’s. One startling conclusion was that while a “Western” diet (red and processed meats, white bread, potatoes, pre-packaged foods and sweets) is associated with cognitive decline, people who ate such food could offset the negative effects and experienced less cognitive decline if they also had a mentally stimulating lifestyle.
Occupations that afforded the highest levels of protections included lawyer, teacher, social worker, engineer and doctor. The key seemed to be working primarily with other people, rather than with things or data. “You can never totally forget about the importance of a good diet, but in terms of your risk of dementia, you are better able to accommodate some of the brain damage that is associated with consuming this kind of (unhealthy) diet,” said Matthew Parrott, of the Rotman Research Institute in Toronto, who presented the study.
Hope for the Future
There are large trials that are ongoing or forthcoming that could provide more evidence to support the effects of lifestyle intervention. We recommend that you check regularly for the latest news on www.alz.org. And start NOW to eliminate as many risk factors as you can from your lifestyle and to encourage those close to you to do the same.
- https://www.washingtonpost.com/local/social-issues/healthier-living-could-reduce-worldwide-dementia-by-a-third-report July 2017 Alzheimer’s Conf.
- https://www.washingtonpost.com/local/social-issues/complex-jobs-and-social-ties-appears-to-help-ward-off-alzheimers-new-research-shows/2016/07/22/5f227bc4-4fca-11e6-a7d8-13d06b37f256_story.html?utm_term=.baf12a7dc2ee 2016 Alzheimer’s Conf.
My husband is still driving, even though it’s been 17 months since I last blogged about “When Is It Time to Give Up the Car Keys,” and I reported how on a road test he had just squeaked past the minimum score required to keep his license. In that time he hasn’t had an accident or been pulled over for any kind of moving violation. Whenever we’re going someplace together, I drive. He doesn’t drive at night and he rarely drives anywhere that he hasn’t been before. The few times I have been with him, the only problem I’ve noticed is that he doesn’t always notice speed limit signs and tends to drive under, rather than over the limit. (This IS a warning sign.) He seems to have learned from the things the person testing him warned him about.
Alzheimer’s Association Positions
That my husband is doing so well—so far—seems to support the Alzheimer’s Association positions that:
- A diagnosis of Alzheimer’s disease is never by itself a sufficient reason for loss of driving privileges.
- They do not support mandatory reporting as a solution to the driving and dementia issue because it can have unintended consequences, including an unwillingness for individuals to seek early diagnosis; risk to the relationship between the physician and patient; and even an unwillingness of physicians to appropriately diagnosis Alzheimer’s disease. California and some other states do require reporting a probable diagnosis to the DMV.
- They recommend that the person with dementia, along with his or her family and friends, are educated about the need to plan and address the issue of driving with dementia.
Normal Aging vs. Dementia
Normal aging does cause physical problems that may affect driving, such as diminished visual and auditory acuity, slower reflexes and lack of flexibility. However, we all age at different rates, and even the onset of dementia occurs differently in every affected person. Dementia patients have additional deficiencies in perception and visual processing; ability to pay attention for extended periods of time; ability to respond to multiple stimuli at once; ability to make correct judgments (such as which drivers have the right of way); and ability to react appropriately when pressured in a traffic situation. Studies have shown that even though people in the early stages of dementia may be capable of driving under normal conditions, they have difficulty responding to new or challenging circumstances, and they are also at risk to becoming lost while driving. As dementia progresses into the middle stages, the ability to drive safely becomes highly compromised.
The Alzheimer’s Association does stress that, “The declining cognitive abilities of a person with Alzheimer’s disease will ultimately lead to the need for the individual to stop driving….At some point in the progression of the disease, driving-performance errors will present a safety risk to both the individual and the public.” So if, as they suggest, we are to involve the person with dementia in the decision making process to determine when it’s time to stop driving, what warning signs should we and they be looking for, and what restrictions can reasonably put on their driving? We don’t want to wait, as many people do, until there has been an incident involving an accident, getting lost while driving or other driving crisis.
Warning signs of unsafe driving:
- Driving at an inappropriate speed
- Stopping for no reason
- Making turns from the wrong lane
- Turning in front of other cars
- Backing up or changing lanes without looking back or checking mirrors
- Unexplained dings and dents around the vehicle
- Forgetting how to locate familiar places and getting lost
- Failing to observe traffic signs or traffic lights
- Making slow or poor traffic decisions
- Becoming angry or confused while driving
- Near misses
- Delayed response to unexpected situations
Recently, my husband wanted to be the one to take my car in for the emissions testing and safety inspection required annually by the Utah DMV. Even he recognized it was not a good sign that he took His car instead of mine and had to come back home and start over again.
Examples of Restrictions
- Driving only in the daytime hours
- Limiting driving to certain areas
- Installing a GPS device to help locate the individual if he or she becomes lost or travels outside a specified area
- Limiting distractions such as the radio or talking while driving
- Abide by a third party driving evaluation, conducted by an occupational therapist or other trained professional
- Limited driving on the freeway
Risks of Self-Assessment
A majority of older drivers decide by themselves to give up driving — over 600,000 a year, according to the American Journal of Public Health. Dementia however, also compromises the ability of self-assessment, and most drivers with dementia fail to realize that their driving is unsafe. Consequently, drivers with Alzheimer’s dementia often continue driving after they have been advised to stop or even after they have had a crash. If allowed to continue driving, 30 percent of drivers with dementia would have a crash under normal driving circumstances at the middle stages of the disease, as estimated by Researchers at Washington University in St. Louis.
Let Physicians and Driving Assessment Centers Take the Rap
If a physician determines it is no longer safe for a person to drive, the physician should recommend that the person “retire” from driving. The physician also should assesses the person who “retires from driving” to determine if he or she is depressed. Families and friends should be prepared to provide alternative ways of transportation and emotional support for when driving is no longer possible, to address feelings of lost autonomy or depression. The decision to take away driving privileges doesn’t have to be contentious for families. Physicians and driving assessment centers can play a key role on taking pressure off family members.
Giving-up driving is reportedly the most difficult decision a person can make, and it will affect their whole way of life. But be aware, giving-up driving is never too inconvenient when compared to the tragedy of a fatal accident. Watch for the signs of impaired driving, and Be Safe!
by Marti Lythgoe, Dakota Home Care Writer/Editor
My 78-year-old husband has been diagnosed with early-stage Alzheimer’s since 3/3/16. It’s been a year since we saw the neurological psychiatrist, but our next appointment is in a week. That has brought a lot of his emotions about living with the disease to the surface, prompting a long and at least temporarily productive conversation. He was worrying about what I might say about his progress during the Dr. visit, but we were able to turn it around and talk about what he would say, because many of the things I had noticed, he had noticed, too, but had been hesitant to talk about. This change centered on him agreeing that it would be more helpful for him to be honest with himself and with the Doctor, rather than denying that anything has changed.
One thing that helped me to steer this conversation in a positive direction was an article I’d read recently on the Alzheimer’s website titled “How Alzheimer’s affects relationships. You can find it here. It contains a little video made by a man who has the disease, and several quotes from others also from that perspective. It emphasizes that the person with Alzheimer’s has a choice as to how they react to and with the people around them, especially their spouse or “partner caregiver.” “Your ability to live well with Alzheimer’s depends on how you choose to continue to be a partner in your relationships.”
In our relationship, I think both of us tend to swing back and forth when it comes to looking at living with the disease through our own eyes and experiences or through the eyes of our partner. I’m certain we will be having a similar conversation in the future, but at least we have cleared the air for the present, and hopefully long enough to get us through my husband’s annual evaluation unscathed.
Tips from the Article
I encourage you to read the article and watch the short video, whether you are the person who has Alzheimer’s, a spouse or another caregiver. I’ll touch on some of the main points here, with the hope that they will have a positive effect on a relationship in your life, whether it’s you or someone you care for who has an Alzheimer’s diagnosis.
Remember that your loved one is still the same person he/she was before the diagnosis.
Even though you may be uncertain about how to respond to your new circumstances at first, maintaining a meaningful relationship throughout your experience with Alzheimer’s can help both parties stay physically and emotionally healthy.
Your loved one may find it increasingly difficult to participate in social activities or interactions that were once enjoyable for both of you. Recognize that anxiety, frustration or loss are common emotions that may come with changes in the ability to follow a conversation, stay focused with competing background noise, or have enough energy to participate in social activities. Do what you can to stay active and socially involved, even if the nature of the activities has to change.
Expect and accept role changes.
As your partner’s abilities change, there will be changes in both of your roles and responsibilities. Here are just a few roles that may have to change over time:
- You may have to do most of the planning and decision making, especially about financial matters.
- Specific functions that were once your spouse’s responsibility may have to be assumed by you. “The hardest thing that I’ve had to overcome is realizing a lot of what I used to do has been passed on to my wife.” Person living with Alzheimer’s
- You may have to do all or most of the driving.
- If your spouse was still employed, you may have to assume the role of bread-winner.
Even though you may have good intentions, you will have to take care not to provide help that feels invasive or is unnecessary.
For the person with Alzheimer’s, it can be difficult to do, but adapting to changes and accepting help from others can be a way to acknowledge the value their assistance brings to your life. The more you can be involved, the fewer negative feelings you may have.
Ways to keep your relationships positive and productive.
- Be open about your feelings. Share your experiences and feelings about living with the disease, both as the patient or the caregiver.
- Be specific about how you would like to continue your relationship and how you would like to be treated.
- Learn how to ask for help. While it may seem like a sign of weakness at first, asking for help when you need it may help you maintain your independence and remain in control.
- Focus on relationships that are supportive, and show your gratitude for the people you love and appreciate.
- See yourself as unique and human, and continue to do things that feed your sense of self.
- Uncertainty, frustration or reduced confidence may lead to stress and changes in feelings toward your partner. Your partner may experience some of these same feelings. Both of you will need to make adjustments.
Tips from people with Alzheimer’s
- Remember that your care partner or others close to you did not ask to be put in this situation either. They have fears and frustrations, too. Working together may make the situation much better.
- If longtime friends shy away, remember your best and real friends will stay with you, Invest your time and energy in them.
- When you feel a loss of equality in a relationship, let the other person know what he or she did and how it made you feel.
When it comes to relationships, it’s important to consider feelings on both sides. The Alzheimer’s Association and other groups provide counseling that can help. Support groups consisting of others in your situation can also provide a release for emotions and ideas of how to make your life-path easier.
by Marti Lythgoe, Dakota Home Care, Writer/Editor
When loved ones die, we expect family members, especially those who were their caregivers, to go through a grieving process. Because professional caregivers are paid for what they do, we don’t always realize that they may have a similar need to process their grief when a client dies or leaves their care for some other reason. As home caregivers and families who employ them, it’s important to acknowledge this grief and find ways to deal with it. Otherwise, it could build up to the point of “bereavement overload,” or the effect of multiple losses with little time in between for a grieving process. In one study of professional caregivers in a long-term care program, 72 percent of the caregivers were experiencing grief symptoms.
The New York Times highlighted this issue in their article On Home Aides and Hidden Grief. Professional caregivers often build a strong relationship with clients, as they work with them over time. This is one of the great things about working as a home caregiver. Though the relationship is a professional one, it is normal to have feelings of attachment. Families want to hire caregivers who will treat their elderly clients like family. That sort of intimacy means that caregivers, too, will ache when the people they’ve grown close to are no longer in their care.
There need not be a death for a caregiver to experience grief. “Anticipatory grief” begins before the person has died, but the emotions—anxiety, anger, dread, sadness—can be similar. When a family member of a client who has an injury, condition or disease like Alzheimer’s that progressively changes their personality, the grief may come from realizing that the person, as they knew them, will be “gone” even before they die.
Family caregivers may also feel loss of their independence and freedom, as much of their time and energy is now going to someone else who needs them. It is normal to feel guilt, anger, bitterness and resentment as one comes to terms with the fact that you can’t change the outcome of the disease and that the life you had won’t be coming back.
Sometimes a caregiver feels a sense of relief when a client dies. They’ve witnessed the struggle and discomfort their client suffered. Positive grief is not the only result of an anticipated death. In fact, it has been noted that 10-20 percent of caregivers experience high stress, while 30 percent are at high risk of clinical depression when their client passes. Caregivers can experience “complicated grief” that has an abnormal reaction time, is suppressed or postponed. In fact, for 20 percent of caregivers, this occurs a year after the death.
Characteristics of professional grief include:
- The effects of are hidden and subtle
- Professional losses accumulate
- It may appear as other emotions such as anger, anxiety, blame, helplessness, and guilt
- It may have a chronic or delayed response — one that never comes to a satisfactory conclusion
- It is a significant cause of caregiver burnout.
Grief and Caregiver Burnout
When grief-producing experiences are layered one on top of another and there is no release for emotions, caregiver burnout can be the result. Symptoms of caregiver burnout can include:
- Withdrawal from friends & family
- Loss of interest in activities
- Feeling sad, irritable, angry, hopeless, anxious
- Change in appetite, weight, sleep
- Exhaustion, both physical/emotional
Relieving Grief that Leads to Caregiver Burnout
- Be open and honest about your feelings. With a support group, a counselor, a good friend, or in a journal, share what you’re going through. It’s OK to cry or admit that you’re angry or frustrated.
- Learn more about your client/loved one’s condition: symptoms, treatment options, progression.
- Make time for yourself and for “normal” activities.
- Reach out to friends and family members and ask for their help.
- Find new activities to share with the “new” person your client/loved one is becoming.
- Take time to talk to colleagues or friends about the person you cared for and what you miss about him/her. You won’t breach client confidentiality if you don’t mention names or specifics.
- Find someone you trust to talk to. Attend a grief support group; see Griefnet or org for options.
- Be conscious of your body and what’s going on in your life; breathe, sleep, eat right, exercise.
- Take advantage of respite care; take a break.
Dakota Home Care now offers “Comfort Care,” an extension of or addition to hospice care. If your loved one needs more than the one or two visits a day provided by hospice, Dakota Home Care can provide comfort-care-trained CNA’s to provide the additional support and care that may be needed—up to 24 hrs. per day. They are specifically trained to work with the hospice agency as well as provide personal care, emotional support and medication administration. Our Comfort Care staff members meet regularly for a “lunch and learn,” where they openly share their feelings about clients, have a chance to debrief after a death, and to learn and receive support from experts.
If you would like to learn more about Comfort Care, call us today at 701.663.5373 for a free consultation regarding how we can help with your loved one’s needs.
- Journal of Pain and Symptom Management, September 2005
- “Understanding Professional Grief“
- Institute for Professional Care Education Webinar: “Managing Caregiver Grief,” with Joann@ouch-its-grief.com
Experts estimate that specialized physicians now have the tools to diagnose Alzheimer’s disease with more than 90 percent accuracy. That fact sent me in search of data on symptoms, and when and in what order they are likely to occur after diagnosis. About 15 months ago, my husband was diagnosed with Alzheimer’s, and I continue to struggle with 1) what about his behavior is symptomatic of the disease, 2) if what I observe will be consistent behavior (Can I count on what he can and cannot do all the time), and 3) what might be just normal aging behavior for someone his age (78).
The short answer: Well….it appears that the short answer to all 3 of my dilemmas is “You can’t be sure.” Because Alzheimer’s affects people in different ways, each person will experience symptoms – or progress through Alzheimer’s stages – differently. Even the definition of “stages” seems a little vague. Some sources listed 3 stages of progression through the disease, while others came up with 7. And even then the reader is warned that symptoms might overlap or even not occur in that particular order. While designating Stages of Alzheimer’s can give a general forecast of what to expect, progression varies greatly from person to person and a division into Stages only provides a general guide.
Another challenge: People with possible warning signs of Alzheimer’s may find it hard to recognize they have a problem and may resist following up on their symptoms. Signs of dementia may be more obvious to family members or friends. And memory loss might not be the first symptom that shows up. My husband’s earliest and most consistent symptoms involve what some experts call “executive function,” or the lack of ability to process a string of instructions or to initiate and plan activities. The neurologist who evaluated his tests confirmed that my observations in these areas were correct.
Progression in 3 stages: The Alzheimer’s Association Website favors describing a 3-stage slow progression for the disease: mild (early-stage), moderate (middle-stage), and severe (late-stage). symptoms are listed. But what I found most helpful and descriptive of my own observations so far is their chart titled “10 Early Signs and Symptoms of Alzheimer’s.” Click on the link to find descriptions and “typical age-related changes” for each of these 10 symptoms:
- Memory loss that disrupts daily life
- Challenges in planning or solving problems
- Difficulty completing familiar tasks at home, at work or at leisure
- Confusion with time or place
- Trouble understanding visual images and spatial relationships
- New problems with words in speaking or writing
- Misplacing things and losing the ability to retrace steps
- Decreased or poor judgment
- Withdrawal from work or social activities
- Changes in mood and personality
Divided into the 3 stages, these are the common symptoms noted by the Alzheimer’s Association:
1) Mild Alzheimer’s disease (early-stage) (Once source said that there is also a stage when Alzheimer’s is developing but no symptoms are yet manifested.)
- Problems coming up with the right word or name
- Trouble remembering names when introduced to new people
- Challenges performing tasks in social or work settings.
- Forgetting material that one has just read
- Losing or misplacing a valuable object
- Increasing trouble with planning or organizing
2) Moderate Alzheimer’s disease (middle-stage) (Typically the longest stage that can last for many years)
- Forgetfulness of events or about one’s own personal history
- Feeling moody or withdrawn, especially in socially or mentally challenging situations
- Being unable to recall their own address or telephone number or the high school or college from which they graduated
- Confusion about where they are or what day it is
- The need for help choosing proper clothing for the season or the occasion
- Trouble controlling bladder and bowels in some individuals
- Changes in sleep patterns, such as sleeping during the day and becoming restless at night
- An increased risk of wandering and becoming lost
- Personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand-wringing or tissue shredding
3) Severe Alzheimer’s disease (late-stage)
- Need round-the-clock assistance with daily activities and personal care
- Lose awareness of recent experiences as well as of their surroundings
- Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow
- Have increasing difficulty communicating
- Become vulnerable to infections, especially pneumonia
At least with an early diagnosis, my husband and I and our family can plan for the future, however uncertain its course may be. The day of his diagnosis, we met with a family counselor in the U. of U. Neurology Dept. She advised me that, “Even though it’s not fair, you are the only one who can change. Ultimately, it’s better to be happy together than to be right.” I took this to mean that whether his changing behavior is a symptom of Alzheimer’s or just part of normal aging, it will ultimately be better for both of us if I can react with patience and understanding…or not react at all.
by Marti Lythgoe, DTN Travel Nurse Editor/Writer
Since my husband was diagnosed with Alzheimer’s and vascular dementia in April of 2016, one difficult thing about it has been knowing what to say to our children and grandchildren. We followed the neurologists’ instruction to immediately tell our grown children about the diagnosis, but we haven’t yet taken them up on their strong suggestion that we get our five children and their spouses together with one of their experts for “Family Counseling.” With four sons whose wives also work and a daughter in VA who would have to be Skyped in, it seems impossible to coordinate schedules. We’ll have to try harder!
That was brought home to me today when I went to lunch with a son who asked questions that I didn’t know how to answer. In the beginning stages, it’s normal for symptomatic behavior to come and go, so some things I notice aren’t noticed by family members who don’t see him very often and some are. I don’t want to paint a picture of his behavior that’s darker or more positive than reality, but sometimes I’m not sure what reality is.
Caregiver Support Group
In my church congregation, there are quite a few women who are either caring for aging parents or spouses with dementia. Inspired by the Alzheimer’s Association, I started an informal “Caregivers’ Support Group” that meets in my home once a month. Last month, one of the women brought in a children’s book titled, Wilford Gordon McDonald Partridge, by Julie Vivas. She read it aloud to us and brought most of us to tears. I already had What’s Happening to Grandpa? By Maria Shriver. That sent us on a search of other books for children or young adults that could answer questions about dementia in a tender, non-clinical way. Everyone there agreed it was a good idea to blog about this perhaps under-used resource.
4 Children’s Books about Dementia – Brief Summaries
Wilfrid Gordon McDonald Partridge, written by Mem Fox and illustrated by Julie Vivas (Paperback, 1989)
Wilfrid, a young boy, lives next door to a nursing home where he loves to visit 96-year-old Miss Nancy Alison Delacourt Cooper. She’s his “favorite friend” there because she has four names, just like he does. When he learns that she has “lost her memory,” he asks other residents what a memory is. Their answers prompt him to gather up “memories” of his own to give to her. While handling Wilfrid’s “memories,” Nancy finds and shares some of her own. In a way that is not-at-all patronizing, Mem Fox shows us how children and adults can help the elderly remember things. [This book is my favorite so far.]
What’s Happening to Grandpa? Written by Maria Shriver and illustrated by Sandra Speidel (Hardcover, 2004)
Ms. Shriver’s book focuses a little more on educating both children and adults about the symptoms of the Alzheimer’s form of dementia. She first draws in her readers by helping us get to know Kate and her Grandma and Grandpa before Kate notices that her Grandpa is changing in ways she doesn’t understand. Kate asks and gets answers to her many questions about her grandpa, but she also resolves to find a way to share and preserve her grandpa’s memories and her memories of him. Ms. Shriver says, “My hope is that this book will inspire children to find creative ways to keep [their grandparents’] stories alive, and that readers of all ages will realize how important it is to cherish the lives, love and memories of our grandparents—now and forever.”
Weeds in Nana’s Garden, written and illustrated by Kathryn Harrison (Paperback, 2016)
In this colorfully illustrated book, the first thing a young girl notices is not quite right is that her Nana has let weeds grow in her usually well-kept garden. Her mom helps to explain Alzheimer’s by comparing it to a tangle of weeds in Nana’s brain that get in the way of her thoughts and memories, while reminding her that “Nana is still Nana underneath.” The story gives examples of the progression of the disease, including Nana not being able to remember her granddaughter’s name, even though she still remembers the names of the flowers and the songs they sing together. At the end of the story there are two pages of “Answers to Questions from Kids.” For every book purchased, $1.00 goes to the Alzheimer Society of Canada.
When My Grammy Forgets, I remember: A Child’s Perspective on Dementia, written by Toby Haberkorn and illustrated by Heather Varkarotas (Paperback, 2015)
Inspired by her own family’s experiences with her mother’s dementia, this author uses half of the book just describing things a young girl’s Grammy used to be able to do, then without a transition, the girl begins describing things her Grammy does that seem a little strange. Perhaps the most beneficial message comes when the girl asks her mom “Does Grammy still love me?” Her mom replies, “Yes, she will always love you.” There is a bit of a role reversal as the girl reads to her Grammy, guides her on walks and tries to make her smile. Every page ends with “I hug my Grammy tight.” Of the four, I think this book is the least valuable, but it also includes some symptoms of dementia not mentioned in the others.
These books and others can be ordered online. Search for other titles on Amazon.com and alz.org. With 13 grandchildren ages 1-24, I plan to add to my collection of books about dementia for children and young adults. The four books I’ve summarized here are just a taste of what’s available!
by Marti Lythgoe, DTN Home Care Writer/Editor
Other books and movies from Alzheimer’s.org and Amazon
The first consideration when moving a loved one with dementia into your home, or even if they’re just coming to visit, is often how to make it safer, for example, how to decrease the risk of falling. Once you’ve overcome that hurdle as best you can, your focus can shift to how to make your home a more comfortable and calming place, with less risk of agitation.
There are many forms and stages of dementia. If you have the objectives of comfort, calm and ease of care in mind, you can adjust the following suggestions to what will doubtless be an ever-changing situation as your loved one’s dementia progresses. Try the things you think will work for you and your family member now, and vary your solutions as needed.
Reduce stimuli in the person’s environment:
- Declutter your home. A simplified environment with clutter-free surfaces is more conducive to keeping emotions on an even keel, and the reduced confusion caused by removing clutter will help everyone in the family.
- Eliminate unnecessary noise. Sensory overload can cause distress. The goal of a peaceful atmosphere that will keep your family member calm and unruffled can often be achieved without the noise of a television, or the sounds from things like wind chimes or dogs or the sounds of traffic. For sounds that can’t be eliminated, a white-noise machine might help to mask them. Carpets, cushions and curtains absorb background noise.
- Playing music from your loved one’s past may actually be calming and help to stimulate memories associated with it. Try creating a playlist from the era when your loved one was young, and have them listen to it through ear phones.
- Adjust the light. Eliminate annoying glare from the windows, while letting in as much natural light as possible. A light-related challenge is the phenomenon known as “sundowning.” When the sun sets, it may prompt feelings of depression, anxiety and even hallucinations in those with dementia. Toward the end of the day, increased artificial light can actually help minimize the effects of sundowning. Put a few lights on a timer to eliminate the need for to remember to turn them on. This also keeps changes in light more consistent from day to day. Leaving a nightlight on can help prevent disorientation and the risk of falling in the dark.
Provide a personalized indoor space. Give your loved one their own place to sit and doze. A recliner, comfortable chair with an ottoman, or a couch where the person can settle in on each visit will help them to feel more comfortable and at home. Try to make this special seating area out of the way of household hustle and bustle, yet still within view. That way, your family member can relax and not be in the way, but you can keep an eye out and ensure his or her safety.
It’s handy to have a side table nearby where you can place an item or two to keep your loved one occupied. Each person will enjoy different things—books, photo albums, telephone. Try various items but don’t overload the person with too much stuff. Keep the space clutter-free.
Provide a safe outdoor space. When the weather is good, your loved one will enjoy the fresh air, the sounds of birds, the sight of flowers and trees, the warm sun and maybe a little exercise. Bird feeders may attract birds that are enjoyable to watch. Enclose the area if your loved one is a flight risk. Partial sun or shade is preferable to full sun. A chair under a tree or an umbrella can help to control the brightness of the light. You might want to set a timer so you don’t leave him or her out there too long.
Adjust flooring where possible.
- Remove unnecessary rugs.Besides being a tripping hazard, rugs can cause confusion and anxiety. A person with dementia may see a rug as a hole and try to walk around it or jump over it, or may simply freeze, not knowing what to do. A necessary rug should have a low color contrast with the floor.
- When replacing the carpet, install the same color throughout the house, to lessen confusion.
- Avoid shiny or reflective flooring. It may be perceived as wet or slippery, and the person may be afraid to walk over it.
Remove nearby mirrors and cover reflective surfaces. If the person you care for doesn’t recognize their own reflection, they may think that the face in the mirror or the person reflected in the window at night is a stranger and be frightened.
Label drawers, cupboards and doors to show what’s inside them. For example, you could put a photo of the toilet on the bathroom door, a photo of a glass on the cupboard, or the word “spoons” on the drawer that contains the silverware. Transparent cupboard doors can be a great help as it’s easy to see what’s inside.
Purchase household items that are specifically designed for people with dementia. Cups with two handles, clocks with large LCD displays, telephones with big buttons and devices to open jars are examples. There are several websites that sell daily living aids, such as the Alzheimer’s Society online shop.
Be sure tables are stable and have round, smooth edges. The height should permit food and drink to be seen easily and a wheelchair to fit underneath, if needed.
Keep a change of clothes handy. Have one drawer for this purpose with at least one pair of pants and two or three pairs of underwear. A clean shirt or blouse may also help to prevent embarrassment when an accident or spill occurs.
Stimulate memories through pictures. If you have family photos on display in your home, don’t put them away until you see how they affect your loved one. If you don’t have pictures up, think about creating a grouping of pictures someplace where they can be enjoyed together. Creating photo albums or scrapbooks that you can look at together and talk about can also be enjoyable, even if your loved one doesn’t remember the people or places in them. Take photos of you and your parent to help you remember the special times you had together.
Monitor personal comfort. Because a person with dementia might not always be able to express how they feel, check for pain, hunger, thirst, constipation, full bladder, fatigue, infections and skin irritation. Make sure the room is at a comfortable temperature. Be sensitive to fears and to the frustration of not being able to express what is wanted.
Try to keep your emotions in check and your voice calm and steady. Avoid arguing, correcting or criticizing. It’s better to be happy than to be right!