Fun Activities and Care Planning for a Family Member with Alzheimer's Disease
The early stages, before severe dementia intervenes, are a time to understand your loved one’s wishes and to begin organizing for the more demanding caregiving that will eventually become necessary.
Mild dementia does not interfere with an individual’s ability to establish advance directives, which indicate important preferences in anticipation of a time when the person will no longer be capable of speaking on their own behalf. A health care power of attorney entrusts someone with medical choices, while a property power of attorney identifies an individual empowered to make financial decisions. The client should stipulate within the health care power of attorney how aggressive life-saving efforts should be. Creating a “living will” should be considered.
Affording the individual an opportunity to make these deeply personal determinations is both respectful and practical. It enables them to specify whom they trust and is a chance to candidly share their views with their named “agents.” Some of these discussions will be difficult, but they can spare painful soul-searching in the future, and having advance directives in place is far preferable to crisis-driven care planning.
This is also a time to consider the possibility that long-term care will eventually be required and to organize finances for that contingency. If long-term care insurance is not already in place, Medicaid planning may be a viable option, possibly involving the establishment of trusts and the “spending down” of assets in order to establish eligibility and ensure the financial security of others.
If not handled carefully, this disruptive time can cause enduring pain. Adult children may be juggling care for both an aging healthy parent and the one affected by Alzheimer’s. The family ecosystem, with its varied personalities, is adapting, and as roles shift between generations and siblings, there’s plenty of room for conflict. If a second marriage and blended family are involved, the situation becomes even more complex.
Sometimes there are flare-ups over the sharing of workload. Sometimes there’s disagreement over a course of action. It’s frequently the special needs/elder law attorney who helps to frame a constructive discussion, laying out alternatives, analyzing options and discussing a division of responsibilities.
“Control and access” are common family issues, with some parties feeling that important information and decision-making aren’t being shared. Advance directives can be drafted to ensure communication concerning specific issues and to establish boundaries to the agents’ authority.
Changing Behaviors and Personality
Family members must prepare themselves for the likelihood that their loved one will undergo personality changes. If we validate our lives through accomplishments, then the loss of our abilities through dementia attacks our self-esteem and identity. The frustration and fear brought on by these alterations are seldom articulated. Rather, the individual begins to act out, often causing great hurt. If the individual had a “difficult” personality prior to the illness, their behavior often becomes more challenging as the disease progresses.
The family must educate itself about coping strategies, and support groups are important for both caregivers and patients. We know that care givers incur incredible stress that is damaging to their own health. They should avoid becoming isolated by identifying resources that will enable them to get out of the house so that they can attend to their own needs. They must give themselves permission to express their often conflicting emotions. Proud people often have difficulty reaching out for help, but it’s important for them to realize that they’re not alone.
Fun and Beneficial Activities for the family member with Alzheimer's Disease
Keeping people active in hobbies and interests that gave them pleasure in the past is important after an Alzheimer’s diagnosis. Those activities
What activities best suit people with Alzheimer’s? That depends on the individual. It is important to create meaningful activities, not just ones that fill time. Consider interests they had in the past, knowing that some activities may need to be modified for safety or practicality. Keep in mind that Alzheimer’s affects behavior and senses in addition to memory. So, activities that a person once enjoyed may become overwhelming or even frustrating now.
Certain activities may work better at different times of day. Understand that the person’s level of interest or involvement may decline as Alzheimer’s progresses.
If your loved one resists an activity, take a break. You can try again later, or ask your loved one how the activity can be changed to make it more enjoyable for them.
Remember to concentrate on the process of an activity and not the results. It does not matter if you never get the puzzle put together. What matters is that your loved one enjoyed the time spent on it and felt useful.
Take a Supportive, Flexible Approach
Suggested Activities for Seniors With Alzheimer’s Disease
Avoiding Alzheimer's Disease with Nutrition and Activity by Felicity DryerCan an apple a day keep Alzheimer's away? Maybe not exactly...but it can’t hurt. As cases of Alzheimer’s rise and the level of care increases, more and more attention is turning to this disease. Scientists are becoming more knowledgeable about its causes and how we might prevent it.
According to research, a brain-healthy diet is just one way to reduce the risk of getting Alzheimer's. Physical activity, too, plays a key role in the health of your brain. "But I'm not doing push-ups with my brain," you might say. But you'd be surprised how much your mind benefits from a healthy body.
Let's explore how eating right and getting off the sofa might help you prevent or at least hold off onset of Alzheimer's disease.
Foods Fighting Forgetfulness
According to the Alzheimer's Research and Prevention Foundation, diet is the first of that organization's "4 Pillars of Prevention." Things like lean protein, good fats (such as avocadoes and flaxseed oil) and foods proven to improve brain function make up an ideal diet for those looking to prevent Alzheimer's.
These so-called superfoods include blueberries, spinach, walnuts and kelp, which are among the foods rich in antioxidants that fight damaging free radicals.
What's else? Fish, fish and fish. The University of Maryland Medical Center suggests eating fish rich with omega-3 fatty acids, such as salmon, up to three times per week for maximum health benefits.
The Center also suggests 6 - 8 glasses of water, preferably filtered, each day. Increasing your water intake can help to flush out toxins in the body. Research led by Keele University in the UK in 2012 showed that a liter of mineral water per day showed the potential to prevent the mental decline linked to Alzheimer's.
Dietary supplements that are thought to help prevent memory loss and improve brain function include zinc, vitamin B12 and folic acid. Omega-3 fatty acids can also be taken as supplements.
It's easier than you might realize to incorporate these foods into your diet. Toss a handful of blueberries into your morning cereal or switch from white bread to whole-grain bread for your sandwich. As for water, drink bottled water and collect the caps to keep track of how much you're consuming.
Going With the (Blood) Flow
Physical activity, which doesn't have to include time spent in the gym but can be something as simple as walking or gardening, increases your blood flow. This would naturally result in improved blood flow to the brain.
As reported by the Alzheimer’s Association, aerobic exercise is best because it increases oxygen intake. Increased oxygen to the brain is vital for brain health! The Association goes on to say that aerobic exercise, such as walking or bicycling, has shown to decrease the loss of brain cells in seniors.
And not just physical activity but brain activity is important as well. Keeping your mind engaged and stimulated can help prevent the disease from starting in the first place. Various studies, including one conducted by the Helen Willis Neuroscience Institute at the University of California - Berkeley in 2012, have shown that higher mental activity leads to a decrease in protein buildup in the brain. This buildup is evident in Alzheimer's patients.
Again, it won't take a complete lifestyle change to work more physical activity into your day. Taking the stairs instead of the elevator or walking instead of driving a few blocks to the store can go a long way toward becoming more active.
What's more, this increased activity might help shed any unwanted weight, which can decrease the chances of, among other things, stroke and diabetes, both of which can be risk factors for Alzheimer's.
None of this, of course, is a guarantee that you won't get the disease. Genetics plays a role, as does other factors such as previous head injuries.
But there are so many health benefits to eating right and getting daily exercise that it's something we should all be doing anyway, especially as we advance in age. And if it turns out to be the one-two punch needed to knock out Alzheimer's, then you've enjoyed an added bonus!
In the early stages of the disease, families often choose home care so that their loved one can remain in familiar surroundings and enjoy as much independence as possible.
As the disease progresses, however, alternative care facilities may be necessary to provide your loved one with the total care he or she will
In Home Care
In the U.S., 70 percent of those diagnosed with Alzheimer’s are cared for at home, creating a stressful balancing act for family members. Care needs differ dramatically, shaped by the course of the loved one’s disease, as Alzheimer’s affects people differently. The caregiver’s personal situation adds another complication. Is the caregiver nearby or across the country? Is the caregiver an elderly spouse, who also may need assistance, or an adult child who must report to a job each day or, as a homemaker, is pulled in many directions?
Regardless of the circumstances, the situation is likely to be emotionally and physically draining. So family caregivers should be attuned their own needs, as well as those of their loved one, in order to provide for them in a sustainable manner. That means finding ways to share the responsibility. Calling on family or friends to stay with the individual while they take a personal time out. Exploring local respite services. Arranging for the individual to participate in social activities at a nearby adult day center. Or, if more assistance is needed, hiring a home care aide.
Research indicates that an elderly spouse often resists outside assistance for up to a year too long, often threatening their own health. Sometimes they resist the loss of privacy that would result if someone new were to regularly spend time in their home. Often, they worry about cost. But waiting too long can force them to make decisions in the midst of a crisis, when options are likely to be more limited.
The costs of in-home care must frequently be borne by the family. Medicare pays for such services only if a homebound individual requires medical treatment. Medicaid coverage differs by state and has strict income and asset eligibility guidelines. And while long-term care insurance (if the person needing care has coverage) may cover some or all of the expense, policy coverages differ and should be carefully researched. On the other hand, if a doctor provides documentation indicating that an individual requires assistance with at least two “activities of daily living” for at least 90 days—eating and dressing, for example—expenses can be claimed as a tax deduction.
Home care aides can be hired on an individual basis or through one of a growing number of agencies, and their services vary. It’s a good idea to ask for referrals from friends or health care providers. Geriatric care managers, for a fee, can be helpful in sorting through alternatives.
Licensed medical professionals providing wound care, physical therapy, injections or other treatments are, of course, more expensive. Others offer everything from “companion services” to housekeeping and meal preparation to personal care such as bathing and toileting. Most will have requirements concerning the minimum number or hours/days per week you must commit to, and some provide services on a live-in basis. Many people prefer to work through an agency so that they needn’t be concerned about tax and Social Security withholding or liability for injuries sustained on the job. Always interview potential caregivers beforehand, using a detailed list of required services as the basis for your discussion.
Resistance from the individual with Alzheimer’s can complicate this process. Their sense of pride and independence may be threatened by the possibility of having someone assist them with personal matters. It’s important to try to understand the basis for their reactions so that they can be reassured. Remember that changes to their routine can create great anxiety and that they may be experiencing confusion.
Try to craft a conversation that addresses their hot buttons in order to convince them that getting help is a positive step. You might appeal to their concerns for safety if they’ve recently suffered a fall, or you might emphasize that this new person will actually be helping you, as the family caregiver. Take an incremental approach and don’t give the impression that you’re suggesting a permanent change. At first, you may want to spend extra time onsite, as the new caregiver adjusts.
It’s important for the aide and your family member to bond emotionally. Tell the helper about your loved one’s accomplishments or favorite memories, so that they can have conversations that draw them closer. You might also identify interests that your family member shares with the aide, such as religious values, gardening or music.
Successfully involving a home care aide in an individual’s daily routine is an ongoing, collaborative process. You should regularly communicate about changing needs, what’s working and what’s not. Having caregivers write up the details of each day in a notebook is a good way of staying on top of things between discussions.
Continuity of care is another big issue, and families must be prepared for turnover. Sometimes personalities simply don’t mesh. Having caregivers immediately assume a “take-charge” attitude can backfire. It may be preferable for them to ease in, being available to help but not intrusive.
Finding and retaining home care professionals who can meet the complex needs of a person with Alzheimer’s and concerned family members can be difficult. Once you think you’ve found the perfect match, circumstances may change. But it’s a challenge made more than worthwhile if it enables a loved one to remain at home.
The Alzheimer’s Association offers neighborhood support groups, and by joining one, the family caregiver can receive additional help and support.
Deciding on Alternative Living Placement
Deciding upon an alternative living placement is not easy. Families of individuals with a diagnosis of Alzheimer's disease and/or a related dementia have a particularly difficult task because the diagnosed individual usually cannot participate in the decision. This leaves it up to the caregivers to decide when and where to move the person.
Sometimes circumstances leave the caregivers little choice (a sudden hospitalization and few openings at local homes), but for most people coping with Alzheimer's disease on a day-to-day basis, there is often time to plan for long-term care. It is in the person with dementia and the family's best interest to plan ahead.
Factors to Determine if Alternative Living is Appropriate
Only you can decide what is best for the person with dementia. As you consider the decision, keep in mind some factors that can help you determine if placement is appropriate. If any or all of the following conditions are present, this can be a strong indication that alternative living would be in the best interest of all concerned.
The person with dementia:
Has become increasingly withdrawn and isolated
Is unable to socialize or take time for themselves.
Considerations for selecting an alternate care facility
There are many things to consider when deciding where to place a person. Your first impressions will probably be the look and feel of the facility. Is it clean and odor free? Are the rooms attractive and pleasant? Is the furniture comfortable and in good repair? As important as these things are, it is more important to look beyond the physical characteristics of the location to try to determine the level of care provided to residents. Look for signs of respect, dignity, and compassion. See if residents are treated as adults. Are they up, dressed and well groomed, or are they physically restrained and look unduly medicated?
If possible, look at several facilities before making a decision.
What services does the facility have for the special needs of someone with Alzheimer's?
Some homes have designated Alzheimer's or dementia units to meet the special needs of those with cognitive impairment. Currently most homes self-define their dementia unit and what is included can vary considerably from home to home.
It is essential to visit all homes under consideration in order to make an informed choice. Most initial visits are spent with the admissions or sales personnel and include a tour of the facility. This can be very helpful in gaining an overview of the facility. However, in order to get to know the facility better, it is highly recommended that you speak with the coordinator of the Alzheimer's program, (if they have one) and spend time in the actual unit where the people with Alzheimer's live. Ask the staff who works with the Alzheimer's patients these questions about their program and services.
What kind of activities do you have for people with memory loss? How many hours a day do you have planned activities? How many days a week
do you have activities? (The better programs have structured activities throughout the day, at least 5 days per week.)
It is also very helpful to speak with the family members of patients who are in the facility; particularly patients who are at a similar level to the person you are placing. Other family members will have an insight into the workings of the facility that you will only be able to get from them. Also ask if the facility sponsors groups for the families of residents.
Caregivers know the person and their particular needs best. Look closely at the residents to see if there is anyone at the facility who reminds you of the patient. Describe the patient to staff, and ask if they think that the patient will fit in with other residents and benefit from the program.
Sometimes the facility does NOT have dedicated staff for people with Alzheimer's. This does not necessarily mean that you should not consider the facility, as the facility may meet the needs of the person with dementia and family in other ways. However, even if they do not have staff dedicated to Alzheimer's person, ask to speak with the people who actually work with the patients, like the Recreation Director. Ask what activities they have and how people with Alzheimer's can and do participate.
The more you observe at the facility, the easier it will be to make a decision about whether it is the right one for your family. You may want to visit more than once, at different times, to observe the routine of the home. No matter how often you visit, try to get a sense if staff knows what they are doing and look to see if the residents seem well cared for, and are actively and positively engaged. This is the essence of good care.
As the disease progresses, will the facility be able to accommodate the needs of the resident? Will this setting still work in 6 months or a year? At what point will a change be necessary? Does the facility have a relationship with other facilities that provide care for patients in the later stages of the disease? If so what are the names of those facilities?
It is very important to review admission and discharge criteria. Under what conditions might a resident be asked to move (change in behavior, change in financial circumstances?) Even though most placements work out, be aware that some do not.
A location convenient to the family is an important consideration. When the facility is convenient to family and friends it becomes easier to visit and there is more opportunity to monitor the care being provided. However, sometimes due to availability or financial reasons it is not possible to find a facility close to the family. Whether a facility is convenient or not, it is important to form relationships with the staff so that everyone can work together to provide the best care for the patient.
Types of alternative care facilities
Assisted Living provides a special combination of residential housing, personalized supportive services and healthcare. It maximizes independence, but do not provide skilled nursing care. It is designed to meet the individual needs of those requiring help with activities of daily living, but who do not need the skilled medical care provided in a nursing home.
Nursing Homes, or Skilled Nursing Facilities, are designed for persons who are in need of 24-hour nursing care. Nursing Facilities provide many of the same residential components of other senior care options, including room and board, personal care, protection supervision, and may offer other types of therapy. Their onsite medical staff sets them apart from other types of senior housing. Nursing care is provided by registered nurses (RN), licensed practical nurses (LPN), and nurses aides at all hours of the day.
Nursing homes usually distinguish between skilled care and custodial (or intermediate) care. Short-term skilled care is usually covered under Medicare and other types of insurance. Examples of skilled care are; physical therapy after a joint replacement or a stroke, nursing services such as IV therapy, dressing changes for a stage 3 wound or new tube feedings. Custodial care encompasses much of the care provided in nursing homes. It is usually not covered by insurance, except for Medicaid. It typically includes assistance with most activities of daily living such as assistance with eating, dressing, bathing, medication management, and walking. A large number of people with Alzheimer's disease or a related dementia will require custodial care.
Small Group Homes are either actual homes that have been converted to handle persons with dementia, or facilities that are built on a small scale for a limited number of residents. There are a number of small group homes in the metropolitan area with a population of people with Alzheimer's.
The following resource links were provided by Angela Tollersons - http://forfamilyhealth.net, a Health & Happiness Resource for Families.
Well Travel: A Guide for Alzheimer’s Sufferers and Their Caregivers
Easy Day-Brighteners for Those with Dementia
Helping Your Loved One with Alzheimer’s
Daily Activities for Alzheimer’s Disease
Overcoming Apathy in Alzheimer’s