Most healthcare professionals understand the pressures family caregivers face every day when trying to manage the care of a loved one.  Most have read some of the research and intellectually understand there are not only emotional risks, but also financial and health risks associated with providing long term care.   The problem is wide spread, according to the National Center on Caregiving there are 44 Million adults in the U.S. that provide some level of unpaid care to an older person or another adult with disabilities and estimates show that up to 70% of those people are currently experiencing some type of significant clinical health issue.

The health risks of caregiving are real and dangerous making this a serious public health issue.  As health care professionals, how can we better educate our patients and their families about the risks of caregiving and provide a means for improving caregivers’ lifestyles in ways that help everyone thrive and avoid health risk.

Raising Awareness about Health Risks for Caregivers:

One of the main things we can do is raise awareness about this issue.  Talk to the families about the harmful consequences associated with caregiving.   Serious conversations need to take place so that families are aware of the risks and understand what steps they can take to maintain their physical and mental health.   The Family Caregiver Alliance offers helpful resources for family caregivers such as A Guide to Taking Care of Yourself.

Provide Health Services for Caregivers:

Services need to be made available to help families.  These services include an increase in appropriate mental health care and medical care for family caregivers.  While the health risks are serious, the actual steps towards preventing caregiver burn-out are not difficult to implement.  Research has demonstrated that the negative effects of caregiving can be alleviated at least partially by doing the following:

1.       Talk about the issues and risks directly with families

2.       Do a needs assessment with the caregiver and put together a care plan with support services

3.       Refer the family to local social and support services such as Area Agency on Aging or Alzheimer’s Association or National Adult Day Services Association.

4.       Encourage the caregiver to participate in caregiver education programs at the senior center or local health facility

5.       Insist the family find respite to reduce the burden of caregiving (Respite can be in the form of adult day care or in-home care or another family member)

6.       Seek financial assistance to help relieve some of the financial pressures

7.       Provide primary care interventions that address caregiver needs

Together, our healthcare community needs to realize the risks of caregiving are significant, but with a little more awareness and intervention we can help our patients and their families avoid risk and thrive as family caregivers.

For elderly individuals with dementia, activity involvement must be a component of a schedule that allows for periods of rest and a nutritious diet that includes plenty of liquids. There must be a balance between rest and activity, social events and quieter pursuits.  Behaviors seldom occur in a vacuum; there are usually reasons for behavioral difficulties. Dementia, after all, may result in problems communicating with others, disinhibition, irritability, irrational fears, or misinterpretation of the environment.

Avoiding Dementia Negative Behavior

Several possible reasons for “negative” behavior(s) are listed, and this includes a few possible approaches to ameliorate the difficulties:

• Overstimulation (boredom may also trigger difficulties) : Provide rest periods in a recliner, or encourage a nap, and cover snuggly with a soft blanket.   If necessary, limit the visit to a briefer time frame.

• Discomfort: Is the individual thirsty, hungry or need to use the restroom?  Does the individual need to sit in a more comfortable chair or just move about?

• Unfamiliar surroundings: Family visits in familiar surroundings may be helpful . Decorating with familiar holiday decorations may help recognition and memories.

• Frustration:  Make sure to allow extra time for task completion. Don’t argue with your loved one.

Imagine walking into a room of “strangers” and not being able to be a part of the conversation or even recognizing what’s going on. How can they feel welcomed and be assisted to recognize the reason for the gathering? Careful planning is one of the keys to successful integration of the dementia-suffering elder into holiday festivities.

There are six categories (domains) of activities. Helping the elder become a part of the festivities without being overwhelmed is important, as is respecting their capabilities, former interests, and attention span. Offering a balanced repertoire of activities from several domains helps to foster interest, too.

Activity Plan for Seniors with Dementia

Physical Activities

• Helping to set the table (omitting knives)
• Taking a brief walk with a family member if able (bundle up if it’s cold)
• Eating foods reflective of their heritage to trigger pleasant memories

Intellectual Activities

• Reading a holiday story together
• Listening to familiar holiday music to trigger memories
• Looking through picture books of holiday scenes and discussing them

Spiritual Activities

• Attending a holiday service according to their religious tradition at a church, synagogue, temple, or mosque
• Playing music reflective of religious heritage
• Thumbing though or just holding their faith book

Creative Activities

• Helping to make a photo book of past holiday celebrations
• Helping to make and decorate familiar no-cook food items (icing cookies that have already been baked, for instance)
• Decorating nonbreakable ornaments with non-toxic materials

Social Activities

• Helping to decorate the home (also physical, creative, and intellectual)
• Talking about past holiday celebrations
• Laughing together and sharing joy

Diversional Activities

• Watching a game with the guys
• Watching a parade on TV with family members
• Watching a family video

Appropriate activities for seniors with dementia help promote:

• Relaxation
• A greater sense of spiritual peace
• Stress relief
• Sense of purpose
• Fitness

They enrich the lives of both those with dementia and that of their families. They enable families to create more treasured holiday memories, while helping to keep dreaded behavioral difficulties at bay.

We would love to hear from other caregiver professionals… what are your thoughts or ideas about the role of activities in seniors? Diversional versus Purposeful? Please share your thoughts with us here or at our Sarahcare twitter or on our Sarahcare Facebook page:

As nurses and activity professionals, how can we help families dealing with a loved one with dementia?  If they are concerned about how to handle the holiday season or how to better include the one with dementia in the holiday celebrations, here are a few tips that may assist them or help you to assist them.

Suggest that the family call the local Alzheimer’s Association.

The Alzheimer’s Association is not only concerned about Alzheimer’s disease, but also related dementias such as frontotemporal disorders, vascular dementia, and mixed dementia.  This organization will often send a licensed social worker (LSW) to the home to assess the individual with dementia, in addition to providing information about care to the family.  Many branches of the Alzheimer’s Association even have lending libraries for families who want more knowledge.

Their site has helpful suggestions for how to handle the holidays.  It even has suggestions for how to help the family include the loved one with dementia in holiday celebrations.

However, they do caution that as dementia progresses, new traditions may need to be developed for a while.  This is because too many extra holiday tasks may increase stress.  They suggest choosing only those traditions that are most meaningful or modifying them so that the demented individual can participate without experiencing behavioral difficulties.

Suggest that the family contacts the local Area Agency on Aging.

The Area Agency on Aging is an especially helpful resource.  The ElderCare Locator may assist with finding this via the web or by calling 1-800-677-1116.

This agency may also send either a LSW or a registered nurse (RN) to perform an assessment, though does not focus exclusively on those with dementia, but on generalized elder-care options.

Suggest that the family contact an Adult day care (ADC) center.

Adult day care is one such option that might help the person with dementia while enabling them to age in place.  Adult Day Care also provides respite for the caregiver, who might then have time to then do a little decorating, go shopping , visit friends or family, get a haircut, attend a holiday party, or go to a religious service.

Adult Day Care also provides holiday activities for attendees in an environment that fosters socialization, while promoting participant safety, and monitoring medical conditions.  This might be one suggestion that you can make that families will find very helpful, not just during the holiday rush, but all year.

Other Resources for Holiday Family Ideas to do with your Senior

-          Caring.com. Offers a lot of tips and advice for families caring for an aging loved one.

-          The Activity Directors Office.  Offers a lot of great simple activity ideas.

While the holidays are indeed stressful at times, they can also be joyful times where meaningful memories are formulated.  However, please remember that both caregivers and those loved ones with dementia for whom they care continue to need plenty of liquids, nutritious food, and a balance between activities and rest to remain healthy and to truly enjoy this festive time of year.

However, signs of depression, excessive fatigue, burnout, or behavioral difficulties always need reported to the doctor, so caution your families to monitor for these.  Sadly, elder abuse may occur if holiday stress triggers those problems.  Read more about Caregiver Burn Out.

Can we prevent Alzheimer's Disease?

The family complains that their 78 year old Mom no longer bakes anything, but she was the BEST cook in the world as little as five years ago.  Dad, 82, used to build things…he made all their kids beautiful and functional coat racks after each one of them married, and he was their go-to guy if anything broke around the house.  Now both just sit around the house, watch a little TV when not napping, and snack on cookies and coffee for most meals.  The doctor says that Mom has arthritis, depression, and mild cognitive impairment. Dad is in the middle-stages of Alzheimer’s disease, but is also diabetic and has had two myocardial infarctions.

About Alzheimer’s Disease

As a healthcare professional, you may already know that Alzheimer’s disease accounts for about half of all dementia diagnoses, that it progressively worsens over time, and that it increasingly interferes with daily functioning.  It is a rapacious creditor that robs individuals of themselves. It refers to a global decline in intellect that interferes with physical, social, emotional, and cognitive functioning (Nurse to Nurse: Dementia Care: Expert Interventions, Cynthia Steele, MPH, RN).  It is not normal aging, but a chronic disease process.  However, there are many other types of dementia per the Alzheimer’s Association.

• Frontotemporal dementia
• Vascular dementia
• Lewy body dementia
• Mixed dementia (types of dementia that co-exist)
• Other causes

But, what is mild cognitive impairment (MCI)?  According to a Journal of the American Medical Association article (www.jama.com) it includes a greater degree of the memory and word-finding difficulties associated with ageing that do not interfere with the ability to carry out routine daily activities.  Unfortunately, many with MCI eventually develop dementia according to the Alzheimer’s Association.

Can we Prevent Mild Cognitive Impairment?

Is there anything that will help to decrease the risk of developing either mild cognitive impairment or dementia?  Is there anything that will help to slow its evolution?  While there does not seem to be any “magic bullet” that prevents Alzheimer’s Disease, risk factors have been identified, and some may be lessened by lifestyle changes may that delay disease onset (Connections, volume 11, numbers 3&4, 2003, from ADEAR Center: Is it Possible to Prevent Alzheimer’s Disease. Unfortunately, there is currently little that can be done for genetic predisposition (APOE-e4) or age, though healthy choices are thought to be helpful for everyone.   That leaves many factors that can be positively influenced by lifestyle.

Keeping the brain active

• Intellectually stimulating activities are associated with reduced Alzheimer ’s disease risk when done regularly per the National Institute of Health (NIH).  Some NIH-sponsored research demonstrates that these may help the brain to be more adaptable and able to compensate for changes (Connections).

Social engagement

• Mayo Clinic research also indicates that “social engagement and intellectual stimulation may make life more satisfying and help preserve mental functioning.”

Heart healthy choices may also promote cognitive health per the JAMA article as well as the Mayo Clinic and NIH recommendations.  Suggestions include:

• Regular exercise on most days (must include appropriate medical guidance)
• No smoking
• Eat a diet low in fat, but rich in fruits and vegetables to help reduce cholesterol
• Manage chronic conditions such as high blood pressure, high blood levels of cholesterol,  diabetes, and depression, all of which impact cognitive health

The Role of Adult Day Care in Dementia Patients

Adult day care centers are one place where elders can come together with their peers.  In 2009, Stephen Ilardi, Ph.D wrote an article titled Social Isolation: A Modern Plague. He noted that social connections have decreased over the last twenty years, which he states has increased the vulnerability to mental illness of various forms.  However, adult day care promotes the social engagement that may help to decrease feelings of isolation, stimulate cognitive functioning, and keep the brain and body as active as possible.

Adult Day Care Centers endeavor to offer intellectually stimulating activities through games, competitions, reading, current events, videos, musical presentations, and other modalities.  Many also have times to reminisce, since this fosters communication and helps the elders to come to terms with significant past events and promote social interaction.  Intergenerational activities are also popular in many centers.  Many also enjoy community outings to restaurants, museums, or even sporting events.

Most Adult Day Care Centers have walking clubs for those individuals who are ambulatory.  However, chair exercises promote physical activity for those unable to walk or exercise while standing.  These exercises help to stimulate circulation to the brain and other areas of the body.

Most Adult Day Care Centers also employ a dietician to develop nutritious meals and snacks.  This fosters a healthy dietary intake recommended to promote health.

Many Adult Day Care Centers also employ nurses to monitor health conditions and intervene when necessary.  The nurse helps to keep the lines of communication open between the physician and family, may offer individualized or group teaching to promote healthy habits, and also teaches the aides to give the best care possible.

Some Adult Day Care Centers also offer assistance with activities of daily living, such as bathing, hair care, and dressing.  This not only helps the participant, but also decreases the caregiver’s burden, and may enable the individual to age in place at home.

Adult day care may be just the place to find socialization with others, good meals, interesting activities, community outings, intellectual stimulation, and physical exercise.  All of this is available for a reasonable cost.  How can you pass it up as an option to enrich an elder’s life?   For more information visit Sarahcare Adult Day Care.

Activities and Seniors

In our caregiver’s blog we will talk about intergenerational activities that involve grandparents and grandchildren as well as creative activities including music and art therapy that can inspire and reduce stress. Our series will include helpful tips for going out including restaurants, religious services, movies, & cultural events because the whole family gets cabin fever. In our Chronic Care Reconsidered blog, for healthcare professionals, we will look at activities for dementia as well as special ways to accommodate chronic illnesses such as stroke in activities & family interactions.

Being together is the heart of family. You shouldn’t have to resign your family to the passivity of the television because of the demands of aging. Caregiver stress can peak at this time to put it gently. We will talk frankly about caregiving: the practical issues, the emotional despair and burden you may feel, and real world tips we use with our own families at Sarahcare, Adult Day Care. Even find a little humor in it for you —-and joy for your family. Of course we want to hear from you. Comment on our blog, join the conversation on twitter at #senioractivity, or share on Facebook. At Sarahcare, we want family caregivers to know you are not alone… we are all in this together.

Louis Tenenbaum, author of the Metlife Report Aging in Place 2.0 Rethinking the Home Care Challenge, discusses how technology could possibly change aging in place care to be more dynamic, responsive, and cost efficient. In rethinking aging in place he also discusses the importance of thinking beyond the house to include the larger community  and social life of the elderly outside the home.

Louis Tenenbaum is an advocate and consultant focused on universal design and aging in place. Louis Tenenbaum speaks, writes, and consults on universal design and aging in place for developers, builders, health professionals, communities and wide ranging business interests. His website is http://www.louistenenbaum.com/.

Please advise each person check to with the physician before instituting changes in diet or exercise, however.  Be attuned to food or environmental allergies, and chronic conditions that might preclude some of the following tips.

Teaching Tips to Promote Self-Management:

• Maintain weight within normal limits or, if overweight, reduce weight. As little as 5-7% weight loss may reduce Diabetes Mellitus risk per the Alzheimer’s Association.

• Become more active While the Alzheimer’s Association recommends a total of at least 30 minutes of exercise five days a week, many elderly will perceive this as an impossible goal. Simple exercises for seniors and increased activity (link to exercise article) may help.

• Obtain adequate rest. Most individuals require approximately 8 hours of rest and sleep
• Encourage a well-balanced diet. Plate method may be useful for portion control: ¼ contains meat or meat substitute, ¼ contains starchy vegetable or grain product, and ½ contains non-starchy vegetables and/or fruits (Living a Healthy Life with Chronic Conditions by Kate Lorig, RN, DrPH, et al, 2006)

• Make healthier food choices. Encourage the individual to read product labels. Encourage a low-fat diet rich in fruits and vegetables, whole-grain products, lean meats or meat alternatives, and low-fat or fat-free dairy products. Encourage baking, broiling, or barbequing instead of frying.

• Proper use of medication. Encourage the individual to take their medications exactly as the physician orders, but to become acquainted with their side-effects and know when to call the doctor with concerns.

• Encourage enjoyable and meaningful activities. Activities decrease stress, stimulate the mind, and help the older adult to remain as socially connected as possible (Nurse to Nurse Dementia Care: Cynthia Steele, MPH, RN, 2010)

Seniors with Diabetes Educational Series

From October 25^th to November 30^th,  we will be writing on the issue of living with and managing Diabetes in the senior years. This will coincide in part with the American Diabetes Association November Awareness Month, but we are kicking off a bit earlier to help caregivers prepare for Halloween.

At SarahCare® we see the struggle with this far too common disease every day in our adult day care centers, both for our family caregivers and their aging loved ones.  Statistics show that the prevalence of Type II Diabetes is rising and often happens with a host of other chronic illnesses, especially as we grow older.

Health care professionals are increasingly concerned about the prevention and management of the disease and how to best provide support and information to family caregivers. With health care costs spiraling because of chronic illness ($3 out of every $4 dollars is spent on treating and managing them), everyone is looking for a better way. We will be discussing adult day services as a way to better manage elderly diabetes and reduce its occurrence in family caregivers by providing respite.  Tune into our professionally focused senior chronic care blog for more information.

The Medicare Adult Day Services Act bill is a significantly important bill for older adults because it would offer Medicare beneficiaries the opportunity to attend adult day care instead of sub-acute care or home care, providing participants with greater independence while offering respite for caregivers.  This represent a major shift in the traditional model allowing seniors and families more choice in home and community based care options.

SarahCare had the opportunity to meet with Peter Notarstefano, Director of Home and Community Based Services for AAHSA and member of the Board of Directors for NADSA, to discuss the impact the bill will have on seniors, their families and the medicare system.

Living successfully with chronic illness often requires specialized or assisted care beyond a physician’s office.  A person’s care has expanded to include multiple physicians, pharmacists, case or private care managers, therapists, and caregivers. Managing and coordinating care for seniors is complex, even for experienced case managers or geriatric care managers.

Healthcare Bill Requires Improved Coordination of Care

The new healthcare bill will require physician reimbursement rates to be based on performance and evidence based outcomes rather than volume thereby pushing providers to move beyond acute treatment and more towards care coordination and chronic care management.  While this is a pressing issue, information about the benefits and appropriateness of care options for seniors can be conflicting even among professional providers.

Understanding Adult Day Care

According to the National Adult Day Services Association, adult day care is a “community-based group program designed to meet the needs of functionally and/or cognitively impaired adults through an individual plan of care.”

Adult day care offers both social and medical models of care coordination.  Typically Adult Day Care services will include social activities, therapeutic activities, nutritiously balanced meals, assistance with personal care, medicine administration and management, overall health monitoring and assistance with treatments such as dressing changes and breathing therapies, and door to door transportation to and from the center.

Adult day care centers are licensed or certified by the state and are professionally staffed.  Registered nurses, dieticians and social workers are often on staff in a medical model adult day care program or are on consulting staff in a social model.  Within the center there are certified geriatric activity professionals and trained direct care staff.

Adult Day Care: Improving Chronic Care Management

Adult Day Care Services can provide care for many chronic illnesses in seniors but is often cited for being particularly beneficial for those with Alzheimer’s disease and other dementia related conditions as well as seniors who may be socially isolated, feeling lonely and combating elderly depression.  Adult day care has been proven to have a positive impact on a senior’s quality of life as noted in a study by the Institute on Aging and their physical mobility (Gerontologist Journal, 2009). Adult day care can also be beneficial for those with multiple chronic conditions including:

• Chronic Obstructive Pulmonary Disease – Therapeutic exercises as well as specially designed activities provide needed exercise that can reduce the effects of COPD  (Cleveland Clinic COPD Exercise guidelines)
• Arthritis – Specially designed activities can help maintain function. Occupational therapy can be provided on site as well as staff assistance with toileting and eating.
• Cardiovascular Disease – Physical fitness exercises provided by trained staff and dietary management provided by nutritionists help senior manage cardiovascular disease.
• Diabetes – Special diets can be provided within the center. This can be particularly useful with participants who are both diabetic and suffering from Dementia who may often forget their diabetic condition.
• Cardio Vascular Accident (Stroke) – Speech therapy and physical therapy exercises designed specifically for people recovering from stroke can be provided to individuals or small groups.
• Dementia – Participating is a variety of new and different activities as well as participating in memory games are shown to greatly improve the effects of dementia and memory loss.  Activities are provided in a safe and structured environment to help support individuals with Alzheimer’s disease and those with other dementia related conditions.
• Elderly Depression – Social isolation plays a significant factor in one’s emotional well-being.  Being engaged and involved in compelling activities with peers helps increase self esteem and feelings of positive self-worth. 

Adult Day Care Preventing Caregiver Burnout

In addition to benefiting seniors with chronic illness, adult day care is also a valuable resource to family caregivers who manage the caregiver burden by providing relief and respite.  Being a family caregiver is very stressful and unfortunately the health of the caregiver is often at risk due to caregiver burnout.  Adult day care can provide caregiver respite by providing a safe and secure environment for the aging senior outside of the home while also handling difficult tasks such as personal care (bathing, toileting, etc.).  Key to managing chronic illness in seniors is the rigorous coordination of care; Adult day care services help family caregivers manage and coordinate care among multiple health providers.

Let us know your thoughts about chronic care management.