The Cost of Caregiving

Family support is critical to remaining in one’s home and in the community.  If family caregivers were no longer available, the economic cost to the US healthcare systems would increase astronomically.

In 2009, about 42.1 million family caregivers in the US provided care to an adult with limitations in their daily activities at any given point in time.  And, about 61.6 million provided care at some time during the year.

The estimated economic value of their unpaid contributions was approximately $450 billion in 2009, up from an estimated $375 billion in 2007.  The report also explains the contributions of family caregivers, and details the costs and consequences of providing family care.

In today’s economic climate, family caregivers remain the backbone of our nation’s long term care system.  Their unpaid contributions, along with those of friends and neighbors, include not only personal care and help with everyday tasks, but also health related activities, like administering medications.

The “typical” US caregiver is a 46 year old woman who works outside the home and spends more than 20 hours per week providing unpaid care to her mother.

The caregivers are improving the quality of life for the ones they care for and reducing the use of nursing home and inpatient hospital care. This is sometimes at a cost to the caregivers themselves, though.

The estimated economic value of caregiving is calculated based on the number of caregivers at a given point in time, providing an average of 20 hours of care per week, at an average value of a little more than $10 per hour. These estimates were from data collected from various surveys.  What ever the figure calculates to be, the estimate is conservative.

Moreover, the “opportunity costs” of foregone wages and non-wage benefits costs the caregivers themselves.  It often creates economic insecurity due to changes in their work patterns.  The loss of wages, health insurance and other job benefits, retirement savings, and Social Security benefits holds serious consequences for caregivers.  More than one-third (37%) of caregivers, to people age 50 or older, reported quitting their job or reducing their work hours.  Another recent study found that midlife women in the labor force who begin caregiving are more likely to leave the labor force than to reduce their hours.

Caregivers are at risk of becoming “patients” themselves. The greater the intensity in the type or quantity of assistance provided, the greater the magnitude of the health effects, which were largely due to chronic stress.

Evidence that family caregiver support delays or prevents the use of nursing homes continues to accumulate.  People who have family caregivers tend to have shorter hospital stays, while the absence of a family caregiver has been linked to hospital readmissions.  Informal care by adult children reduces Medicare inpatient expenditures of single older people, as well as expenditures for home health and skilled nursing facility care.

The role of family caregivers as critical partners with professionals in the care of patients with chronic illnesses, along with the need for better communication with and support of family caregivers is essential.   Interventions that focus on the roles of family caregivers during care transitions show positive results, ranging from better patient outcomes in functional status and quality of life to reduced re-hospitalizations.  For example, better discharge planning involving family caregivers during transitions from hospital to home may not only improve quality of care, but also help to avert early hospital readmission.

It is essential to prevent family caregivers from being overwhelmed by the demands placed on them. The cost of funding more services and supports for caregivers is minute compared to the value of their unpaid contributions. Moreover, caregivers help contain health and long term care costs by delaying or preventing the use of nursing home care and hospital inpatient care.

Summer Safety for People with Dementia

The pleasures of summer include longer, warmer and sunnier days, celebrations with family and friends, and backyard BBQs. For the person caring for a loved one with dementia, summer can also bring with it additional safety challenges. By taking a few minutes to learn the safety tips outlined below, families can enjoy a fulfilling and pleasant summertime together.

• Limit your loved one’s exposure to the sun. Place comfortable lawn chairs in shaded areas. Encourage him/her to stay indoors between 10:00 a.m. and 2:00 p.m. when the sun’s rays are the strongest. Encourage your loved one to wear a hat and sunglasses to protect his/her eyes.
•  Remind your loved one with dementia to apply and reapply sunscreen when outside for long periods of time. Spray-on sunscreens are now available and may make application quicker and easier. 
•  During the summer heat it is especially important to drink lots of fluids. Offer the person with dementia a small glass of water to drink hourly, or keep a cool glass of water within arm’s reach as a reminder to him/her to drink. Provide non-alcoholic beer or lemonade for backyard BBQs.
• Reorganize your loved one’s closet; put away winter clothes and replace them with light clothing appropriate for the season.
• Noise and crowds of people can cause a person with dementia to become agitated or wander in search of a quiet place. Fireworks displays, parades and picnics in the park on holidays may overwhelm your loved one. Consider watching fireworks from your home or in the quiet of the car and parades on television; picnic during less crowded hours and days.
• Backyard BBQ’s and fireworks can create a fire and safety hazard for your loved one with dementia  who does not remember the proper use for such items. Never allow unsupervised access to open flames and hot surfaces.
• Attending a minor or major league ballgame may be something your loved one has always enjoyed. However, large crowds can be overwhelming for the person with dementia. Identify someone in your group to be the designated “buddy” so you don’t lose track of who was supposed to stay with your loved one. Make sure someone always accompanies your loved one to the restroom and the concession stand and stays with them until they are ready to return to their seat. In large crowds the risk of being separated is great and can happen very quickly.
• Swimming may be a favorite pastime for your loved one with dementia. While the physical exercise should be encouraged, do not allow an individual with dementia to swim unsupervised, and do not leave children in the pool under the supervision of the person with dementia even for a short period of time.
• Bicycling can be an enjoyable way to exercise in the summer, but traffic and other external stimuli can cause a person with dementia to become distracted, resulting in an accident. If your loved one still enjoys bicycling, consider accompanying him/her  on the ride or ask a trusted companion to accompany him/her. Encourage your loved one to wear a helmet and to ride on trails designated for pedestrians and cyclists.
• Gardening can be a pleasurable and relaxing activity but can also pose risks for the person with dementia. Keep an eye on sharp gardening shears or tools and closely monitor their use. Use fertilizers that are not harmful if swallowed accidentally and ensure that the plants in the garden are not poisonous.
• Family reunions can be overwhelming to the person with dementia and may rely greatly on his/her ability to recall names and faces. Consider limiting the amount of visitors and prepare both family members and the person with dementia in advanced for the visit. Have a back- up plan that will allow for a quiet place of rest if things become overwhelming or confusing.
• Many families plan vacations and trips during the summer time. Remember that new and unfamiliar places can be confusing for the person with dementia. Consider simplifying travel plans or traveling to a familiar destination.
• When visiting relatives this summer, remember that dementia can have a big impact on every member of the family including children. Each child will react differently to someone who has dementia.
• The young people in your life might have questions about what is happening. It’s important for you to take the time to answer these questions openly and honestly. It will also help to share with them the changes the disease might bring, now and in the future.

The local Alzheimer’s Association can help answer questions and provide additional information about how the family can work through the changes brought on by the disease and keep your loved one safe.

Some additional summer safety and preparedness tips from the Red Cross for all adults: As our bodies age, skin and fat tissue, the body's insulators, tend to thin. Because of that change, seniors regulate temperature less efficiently, putting them at greater risk than others from heat-related health problems. Signs of dehydration or heat exhaustion are less pronounced in seniors, who:

·         Tend to perspire less than younger people—so their bodies don’t shed heat as easily as they once did.

·         May lose some of their sense of thirst and not feel thirsty until severe dehydration has set in.

·         May take high blood pressure and heart disease medications that remove salt and fluids from the body. These medications, coupled with heat, can cause a senior to become dehydrated—leading to confusion, organ damage and even death.

The following tips can help seniors beat the heat.

·         Slow down. Strenuous activity in extremely hot weather adds strain to the heart. If you must be active, choose the coolest part of the day.

·         Take regular breaks when engaging in physical activity on warm days. If you think that you, or someone else, show signs of heat-related illness, stop your activity, find a cool place, drink fluids and apply cool compresses.

·         Stay cool. If you don’t have air conditioning, spend time at an air-conditioned shopping center, senior center, library, movie theater, restaurant or place of worship.

·         Plan outdoor activities in the cooler early morning or evening hours

·         Stay in the shade. A covered porch or under a tree are good choices.

·         Wear a wide-brimmed hat and umbrella to protected yourself from sun overexposure

·         Use U/V skin protection

·         Stay cool in your home. If you must be at home without air conditioning:

·         Stay in the coolest part of the house—usually the lowest floor.

·         Close curtains or shades on sunny windows to keep out heat and light.

·         Use portable and ceiling fans, and/or battery-operated hand-held fans and misters.

·         Install outdoor awnings or sun screens.

·         Use wet washcloths or ice cubes wrapped in a washcloth to pat your wrists, face and back of the neck.

·         Take cool baths or showers.

·         Stay hydrated. Carry water or juice with you and drink continuously even if you do not feel thirsty. Avoid alcohol and caffeine, which dehydrate the body.

·         Eat small meals and eat more often. Avoid foods that are high in protein, which increase metabolic heat. Sandwiches, salads, fresh fruit and vegetables are good choices.

·         Avoid using salt tablets unless directed to do so by a physician.

·         Dress for the heat. Wear lightweight, light-colored clothing. Light colors will reflect away some of the sun's energy. Wear a hat or use an umbrella as well.

·         Discuss with your doctor how medications and/or chronic conditions may affect your body's ability to manage heat.

·         Take the heat seriously. Rapid heartbeat, dizziness, diarrhea, nausea, headache, chest pain, fatigue, clammy skin, mental changes or breathing problems are warning signs that you should seek immediate medical attention.

Frail seniors who live alone should be looked in on often during hot weather by family members, neighbors or friends.

I hope you enjoy the summer, but stay safe doing so.

Beat the Summer Heat

Whew, we’re off to a hot start to the summer season! As I’m writing this, we have just had a couple of days of 90 degrees.   With summer upon us, the heat is more than a cause for discomfort – it can be a health risk.  Older adults are more susceptible to heat related illnesses including heat stroke and sun poisoning.  Because their cardiovascular system cannot with stand heat related stress or illness they are at greater risk and more susceptible to the heat.  During periods of extreme heat and humidity, family members and friends living near older adults should check in on them periodically.  There are several precautions that should be taken to help older New Yorkers avoid being over come by the heat, including:

            Drinking plenty of water and non-alcoholic beverages.

           

            Staying indoors, especially in well ventilated or air-conditioned rooms.

            Closing blinds or curtains to keep direct sunlight from entering windows.

            Staying in the shade and wearing a hat when outdoors.

Wearing loose fitting, lightweight and light colored clothing and choosing fabrics such as cotton or silk, which allow the body to release heat.

Taking cool showers or baths.

Eating light meals of salads and fruit that help replenish fluids to the body.

Heat affects us all differently, but our older citizens are at greatest risk and are encouraged to protect themselves from the consequences heat can have on their health. And, right here in our own community is one of the best resources for avoiding the heat and remaining healthy during the height of the summer season – fun activities with friends in the comfort of an air-conditioned building. Men and women both benefit from social activity at older ages.  Those that interact with others tend to be healthier, both physically and mentally. Additional types of social interactions include participation in recreational and educational activities such as visits to movie theaters, sports and recreational events, traveling, participation in groups, etc.  Seek out a cool spot if you do not have air at home.

Mental Illness and Health

People with serious mental illness – such as schizophrenia, bipolar disorder and disabling depression – are 2.6 times more likely to develop cancer than the general population, a new study by Johns Hopkins suggests.  The study’s findings raise questions about whether patients with serious mental illness are receiving appropriate cancer screenings and preventive care related to risk factors, such as smoking.

The increased risk is definitely there, but we’re not entirely sure why, says the study leader, an associate professor of medicine and psychiatry at the Johns Hopkins University School of Medicine. “Are these people getting screened? Are they being treated? Something’s going on.”

In a separate study, published online last month in the journal Injury Prevention, it was found that people with serious mental illness were nearly twice as likely to end up in a hospital’s emergency room or inpatient department suffering from an injury than the general population and about 4.5 times more likely to die from their injuries.

Roughly 5 percent of Americans have a serious mental illness, and this group is known to be two to three times more likely to die prematurely than those without disabling psychiatric problems. A small proportion of the higher risk, she says, can be attributed to the higher risks of suicide and homicide victimization in this population, but those factors do not account for most of the disparity. The top causes of death are cardiovascular disease and cancer, the same top causes of death for those without serious mental illness. Speculation is that this population is “falling through the cracks.”

In the first study, data from 3,317 people with schizophrenia and bipolar disorder were evaluated, determining whether they developed cancer between 1994 and 2004 and what type of cancer they had.  It was found that patients with schizophrenia, when compared to the general population, were more than 4.5 times more likely to develop lung cancer, 3.5 times more likely to develop colorectal cancer and nearly three times more likely to develop breast cancer. People with bipolar disorder experienced similarly high risk for lung, colorectal and breast cancer.    

One reason for the elevated risk of lung cancer could be smoking, which is more prevalent in people with serious mental illnesses. The professor also speculates that the breast cancer risk could be related to the fact that women with schizophrenia and bipolar disorder are less likely to have children, and childbearing is believed to reduce breast cancer risk. The colorectal cancer risk, she says, could be related to lifestyle issues, such as smoking, lack of physical activity and a diet lacking fruits and vegetables.

More study is needed on extent to which this population receives appropriate cancer screening and treatment. Mental health providers and primary care physicians must work together to promote screening as well as to reduce risk factors such as smoking among this group.

Challenges in Care

Up to a fifth of Americans over 65 years old have mental-health or substance-abuse conditions, according to a report released by the Institute of Medicine, an independent government-advisory group. According to this study, at least 5.6 million up to as many as 8 million older adults in America have one or more conditions, which present unique challenges for their care. And, the health-care system isn’t set up to adequately address their concerns.  With the number of adults age 65 and older projected to soar from 40.3 million in 2010 to 72.1 million by 2030, the aging of America holds profound consequences for the nation.

Substance abuse appears to be a growing problem among Baby Boomers, and there’s no reason to believe the trend will stop. Between 2002 and 2007, the percentage of people aged 50 to 59 nearly doubled to 9.4%, and non-medical use of prescription drugs also increased substantially to 4% from 2.2%.
Also, of particular concern are depression and dementia-related behavioral or psychiatric symptoms. Some of this may be brought on by the events more commonly experienced later in life, such as the death of loved ones.  Another factor in the looming increase in demand on the mental health-care system is simply a larger number of aging Americans.

However, older people are less likely to seek psychiatric treatment compared with younger ones, and the availability of services and professionals geared to treat this population is lacking, according to the report.
Many older people with mental-health problems also have physical ailments, so clinicians have to be especially careful to avoid unsafe drug interactions.

An older person’s goals for mental-health treatment also may be different than a younger patient’s. Instead of a total cure, an older individual may just want to function better while reducing the amount of needed medications.

For decades, policymakers have been warned that the nation’s health care workforce is ill-equipped to care for a rapidly growing and increasingly diverse population. In the specific disciplines of mental health and substance use, there have been similar warnings about serious workforce shortages, insufficient workforce diversity, and lack of basic competence and core knowledge in key areas.  An expert committee assessed the needs of this population and the workforce that serves it. The breadth and magnitude of inadequate workforce training and personnel shortages have grown to such proportions, says the committee, that no single approach can adequately address the issue. Overcoming these challenges will require focused and coordinated action by all.

Senses of smell, taste can change with age

This week, my blog discusses sensory changes that accompany aging – specifically the changes to taste and smell that come with aging.

In a recent study, the foods most often identified by taste and smell were: salt 89%, coffee 71%, tomato 69%, fish 59% and sugar 57%.  There is an indication that the senses of taste and smell decline significantly with age. If an individual is also having difficulty with their vision, they may be quite limited in their ability to identify foods, causing foods to have little appeal. Distinctive textures and temperatures, such as in ice cream or popcorn, can be important for the enjoyment of foods.

Poor nutrition can have serious consequences for elderly people, so it is important that they eat properly.  Tasteless foods make eating less enjoyable and bland, low salt or other diet restrictions can contribute to the undesirability of food.  A pleasant mealtime atmosphere and foods that are enjoyed in a social setting can make people feel more like eating.  Talking about food, the good taste and smell can make the food appear to taste better. Condiments and foods with strong flavors may also help to maintain interest in eating.

Poor sense of smell and taste may make it difficult to recognize spoiled foods or the smell of danger such as gas.  This is a potential hazard for the person who lives alone.  Older people with diminished smell and taste are encouraged to keep track of the age of foods in their refrigerators and check the pilot lights of gas stoves regularly.  Also, family members and friends can check these things whenever they visit.

I hope this bit of information has been helpful.  If you are looking after a parent, grandparent, friend, or elderly family member, please remember these tips that can help you compensate for the effects of diminished taste and smell on your loved one.

Be Sensitive to Parents Feelings

Most adult children of aging parents understand the importance of attending to a parent’s physical, medical and financial needs.  But we often overlook the psychological aspects of aging, according to geriatric nursing specialists.   It’s hard to grasp what it is like to be at a stage of life we haven’t reached yet, and aging isn’t a subject seniors talk about with ease.  But we need to try to understand what they are experiencing so we can be sensitive to their feelings as we take on even more responsibility for their care.

What would our parents tell us about aging if they could?  Here are 12 things that aging parents and those who care for them think it’s important for us to understand:

1.)                “It’s hard to admit that I need help.”  Adult children are often frustrated when parents who can no longer manage on their own still resist having someone come in to help.  To us, it’s the only way to ensure they’re being well cared for.  But to them, the introduction of help may mean something more distasteful – it reinforces feelings that they are losing their independence.  Accepting help can also constitute an invasion of privacy or disruption of routine.

2.)                “I need time to adjust to change.”  It takes time to admit they can no longer do everything themselves.  Some people accept help willingly as a means of staying in their homes.  Others are hesitant at first but slowly adjust as they see that assistance makes their lives easier. 

3.)                “Don’t talk down to me.”  Imagine living a long, rich, productive life only to be spoken to and treated condescendingly by someone decades younger.

4.)                “I’m not helpless.”  Just as offensive is the assumption many younger adults make that age equals incompetence. 

5.)                “My biggest fear is being a burden.”  Years of caring for her mother-in-law had taught Annette how much pride her mother-in-law took in living independently.  But Annette didn’t realize how sensitive her mother-in-law was to the amount of care she still needed until she developed a kidney infection.  As it came on, Annette spent 3 days and nights caring for her.  Annette didn’t give her caretaking much thought, but her mother-in-law did.  When she finally had to be hospitalized, she told the nurse how glad she was that Annette would finally get some rest.

6.)                “I need to feel useful.”  Everyone needs to feel a sense of competency, a sense of not being totally dependent on others.

7.)                “I still want to live my own life.”  Rather than live with adult children and fear becoming a burden, some people prefer moving to an assisted living facility.  Older adults want to be around people their own age and get involved in activities.

8.)                “I miss all of my old friends.”  Most seniors with loving family around them realize how blessed they are.  But friendships are also important.  When chances to share feelings, problems and memories with friends dwindle, the loss can be a major blow to a person’s sense of well being.

9.)                 “I don’t feel any different on the inside.”  It’s impossible for younger, healthier children to understand what it’s like to experience the physical losses, changes and deterioration that accompany aging – especially for individuals who remain mentally sharp and still feel whole in mind and spirit.  People tend to see themselves as the same continuous person regardless of how old they may be.

10.)                        “Walkers are for old people.”  Esther says, “When I’m out with a walker, people look at me like they feel sorry for me and I hate that.”    Though a walker or cane keeps older people safer and prevents them from falling, they see it differently.

11.)                        “It hurts to leave home.” Older people often miss their house, friends, and neighborhood that were such an important part of their live.  It can be traumatic to adjust to a new surrounding and signals that their lives have changed forever.   Even when elders decide on their own to give up their home, there is still the issue of what it signifies.

12.)                        “My memories are precious.”  Surround your parents with memories that include photographs of children, grandchildren, pictures of special occasions, chronicles of your life that are important. 

The more sensitive we can be about what our aging parents are going through, the more we can offer the kind of help they really need.