LONG DISTANCE CAREGIVING

Long Distance Caregiving


The Long Distance Caregiver


Tips For Long Distance Caregiver

Holidays - JULY 4TH

6 Tips for Embracing Caregivers at Holiday Gatherings

Post on: Dec 12, 2014 

 Yosaif August 

 1

olidays increase stress for everyone, especially caregivers. A new APA study found that more than 6 out of 10 Americans report significantly more stress during the holidays.

Caregivers need to find ways to manage their stress this holiday season and family and friends can use their holiday gatherings to help them do this. But first they need to open the door to a conversation with the caregiver about how they are doing. Here are tips for them to get this conversation going and allowing the love and support to flow.

Before we start, I offer a few questions for you to consider and comment on.

• Which friends of yours are doing caregiving – either directly or from afar?
• Who can you imagine might be open to having a conversation with you about how they are doing?
• What will it take for you to be willing to step forward and start a conversation with them?

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1) Begin a respectful, productive conversation with the caregiver without invading their privacy.

Find a private time and place and ask permission to discuss their caregiving situation. For example: “I want to check in with you about how caregiving is going and (not but!) I don’t want to intrude. Can we talk?” There’s no guarantee about how this inquiry will land and what kind of response you’ll get; however, respecting their space by asking for permission to speak about this is a love and support in its own right.

2) Agree about whether this conversation – or part of it – is confidential or not. 

This is important in engendering enough trust that the person feels safe sharing what is truly going on for them.

3) Ask questions about the caregiver’s well-being and be a good listener.

This conversation is about being truly present. The best way to see if your help is desired or even appropriate is by your attentively listening and not being too quick to get into problem solving. Ask one or two broad and general questions and then let it happen. For example: “Tell me how it’s going.” “What’s it like for you these days?” “I so much admire all of what you’re doing; how are you managing to do it?”

4) Honor and affirm the caregiver for their generosity, perseverance, and commitment.

Caregiving is one of the most generous acts we can ever be called upon to do – even if we are doing it ambivalently , reluctantly, resentfully, out of sense of guilt etc. We are being called upon to put another’s needs ahead of our own and to be willing to interrupt other priorities we are tending to in our lives. It also calls upon other qualities that may indeed reflect our deepest held values. In fact, it calls upon these even if we’re doing if for some of the less noble reasons I mention above. So, if the spirit of the conversation permits it, offer some affirmation of the way you see that person truly walking their values in the ways they are caregiving.

5) Explore ways to share the care and be part of the caregiver’s circle of support.

If the conversation goes in this direction, ask what you could do in the following week that would lighten their burden in a practical way. You might offer to have a follow up conversation soon to find some follow up ways of helping – directly and also in helping them strengthen their network of support.

6) Offer to help them explore the possibilities of using a caresite.

Caresite is a term I’ve coined for the free websites that are available on the web to help famiIy caregivers let people know what is going on, what they need, when/how they need it, and also to receive loving affirmations and prayers from people who care about them. The most popular caresites are Caring Bridge, Lotsa Helping Hands and CarePages. If this prospect sounds intriguing to them, set up a time to sit by their side and do some exploration of these caresites on the web. Let them know if you would be willing to help them choose and set up a caresite or help them find someone else who can do it. (The current experts these days seem to be people who are 12 years old!).

My big message this holiday season? This all about relationship and connection. Caregivers can not do this alone. You can use the warmth of your holiday gathering to open up the healing possibilities that are right in front of you.

(caregiverspace.org)

Summertime Is Calling

Summertime Is Calling

Summertime is calling...but not to me.

Barbecues are being enjoyed all around me to see.

Soaking up sunshine at beaches

Warm breezes caressing as they picnic at parks

Parades of the present, reminding of parades past

Brief glimpses of fireworks from the back door

No point in wanting to see more...

Festivals, I don't like crowds, and I don't like noise...

but I remember a tasty turkey drumstick..

would like just one more?

Inside is where my responsibility lies...

In staleness and silence

Hard to envy, hard to not cry

So much has been missed, so much missed still

How long will it go on, how long till?

(thebearhugwaltz, Donna Webb May 28, 2010)

Holidays/Special Days

PICNICS, PARADES, PARTIES

(thebearhugwaltz)

I have written about how even though this is my favorite time of  year, it is also my worst time.  This is the season of picnics and parades and outdoor parties.  We do get invites, but often the work involved to for both of us to attend is just to much.  Setting up one or more sitters for mom so that we can go to a gathering, and not watch the time to rush back home.  It is no fun at all when we have to go by our self, and one stay home, so most of the time, we just don't go anywhere. 

As I thought about this, I went back to my being invisible post, where I had talked about how I had wanted someone to bring me free pancakes at a local spot was offering.  What if family/friends considered bringing a dish or even more then one from a picnic, cookout or party, to a home where they knew a caregiver was, who couldn't get out and enjoy these functions?  Does anyone think about something like that?  I am not just referring to myself and my husband, but any caregiver who cannot go and enjoy these good times in the summer.  Of course this can apply to any holiday or function where food is involved, and these individuals would be there if it was not for their caregiving responsibilities.

The 4th of July is coming up, it will be a quiet and lonely day, watching all the cars driving by going to the parade and then back home to get ready for their picnics and cookouts.  Then at night driving downtown to watch the fireworks.  Some of these things, we pretty much stopped doing long ago when the kids didn't want to anymore.  But to have a choice to do them, that we really don't have anymore.  

It is not just missing out on all the wonderful summer foods, some of which we could fix, but it is certainly not the same, it is that someone thought about us, and they took the time to bless us with some picnic goodies.  It is not being invisible, it is someone caring about us here within these 4 walls. 

Does anyone ever think about what good deed they could do for someone?  Well, here you go...go bless a caregiver with some wonderful summer treats!  Little things mean alot believe me!

WANDERING

She's a Wanderer, She's a Wanderer, She Roams Around, Around, Around

(hebearhugwaltz.com  Nov.6, 2009)

I can’t say how many times I would get up during the night or early morning hours, look over at mom’s house and see lights on, not just in her bedroom, but in the front room too. One time, my husband happened to be getting back late in the evening and saw her kitchen light on. He went to check on her and she was getting ready to eat breakfast ….at midnight.


Day and night, night and day, it all blended together for her most of the time. With no one living with her to schedule her days and nights, she did her own thing. When she woke up, if she decided it was time to get up, even if it was still dark out, she would get up, get dressed and go and have breakfast, or go sit in the front room for and read or watch TV for awhile.


Living next door, we checked on her in the morning and during the day as we could and then again in the evening. We did things for her that she could no longer do. But keeping her in bed at night, that we couldn’t do because we weren’t physically living in her house….yet. She also spent a lot of napping during the day, basically because no one was here and she would get lonely or bored, so of course that didn’t help her to sleep during the night either.


When we had the fire, the only thing we could do was to move in here with mom, or we would have been homeless. A new chapter in our lives, from a book I never thought I’d be writing. That was my grandma’s house. It was over 100 years old. Grandma raised her family in it, dad and mom raised the five of us in it, I raised my four sons in it, and all but one of my seven grandchildren had spent time in it. So, that which contained my lifetime of memories was now a blackened shell.


But we were well, and now faced with the job of making this little house of one, a house of three.
We had to sleep on the hide-a-bed in the front room, and many times during the night we would be awakened by the ‘wanderer’. She would wake up, go potty, and decide to get up and get dressed and come out of her room. She would turn on the kitchen light, or walk into the front room and sometimes turn on a light in there, where we were trying to sleep! She’d head for the bathroom, turn on another light! She wanted to get her teeth! Now all this would occur in any sequence and at any time of the night or early morning hours. Every night we were ‘chasing’ her back to bed at some point! Every night we would awaken to the dreaded metallic click! Click! Click! As her walker made it’s way across the kitchen floor, knowing that confrontation was soon to begin again. Sometimes, she would just walk into the kitchen, look at the clock, turn around and go back to her room and to bed, yay! However, that was few and far between. This was the nightly routine for about six months. Nightly sleep interruptions, yet those were the easy nights!
The weeks following when she broke her ankle, and had the black out episode were very taxing emotionally and physically. They had affected her mental and physical abilities greatly. She did recover well from the ankle break and walked with her walker again, but always had to have someone near by. Her mental acuity is what it is, and we deal with the fuzzy moments, repeating conversations or information as often as we have to.


She has been totally depended on us since that time, although she will state, I don’t need anyone to look after me! She still has a great sense of humor. She loves to watch The Chronicles of Narnia, Jumanji and she gets a good chuckle at the Three Stooges! She said to me one day, “We sure do have fun here don’t we?” and another time she told me I was more fun than a barrel of monkeys! That was almost 4 years ago, and the realities of care giving have long sense set in. But we will still try to keep humor going. You have to do that for everyone’s sake.

WANDERING

Wandering and Getting Lost

Six in 10 people with dementia will wander. A person with Alzheimer's may not remember his or her name or address, and can become disoriented, even in familiar places. Wandering among people with dementia is dangerous, but there are strategies and services to help prevent it.

• Who is at risk?
• Tips to prevent wandering
• Make a plan

Who is at risk of wandering?

Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. It's important to plan ahead for this type of situation. Be on the lookout for the following warning signs:

Wandering and getting lost is common among people with dementia and can happen during any stage of the disease.

• Returns from a regular walk or drive later than usual
• Tries to fulfill former obligations, such as going to work
• Tries or wants to "go home," even when at home
• Is restless, paces or makes repetitive movements
• Has difficulty locating familiar places like the bathroom, bedroom or dining room
• Asks the whereabouts of current or past friends and family
• Acts as if doing a hobby or chore, but nothing gets done (e.g., moves around pots and dirt without actually planting anything)
• Appears lost in a new or changed environment

We Can Help

The Alzheimer's Association offers programs designed to assist in the monitoring and return of those who wander.

• MedicAlert^® + Alzheimer's Association Safe Return^® is a nationwide identification program designed to save lives by facilitating the safe return of those who wander.
• Comfort Zone^® and Comfort Zone Check-In^®  allows families to monitor a person with dementia's whereabouts remotely using Web-based location services.

Back to top

Tips to prevent wandering

Wandering can happen, even if you are the most diligent of caregivers. Use the following strategies to help lower the chances:

• Carry out daily activities.
  Having a routine can provide structure. Learn about creating a daily plan.
• Identify the most likely times of day that wandering may occur.
  Plan activities at that time. Activities and exercise can reduce anxiety, agitation and restlessness.
• Reassure the person if he or she feels lost, abandoned or disoriented.
  If the person with dementia wants to leave to "go home" or "go to work," use communication focused on exploration and validation. Refrain from correcting the person. For example, "We are staying here tonight. We are safe and I'll be with you. We can go home in the morning after a good night's rest."
• Ensure all basic needs are met.
  Has the person gone to the bathroom? Is he or she thirsty or hungry?
• Avoid busy places that are confusing and can cause disorientation.
  This could be a shopping malls, grocery stores or other busy venues.
  
  
  
• Place locks out of the line of sight.
  Install either high or low on exterior doors, and consider placing slide bolts at the top or bottom.
• 
  Use devices that signal when a door or window is opened.Camouflage doors and door knobs.
  Camouflage doors by painting them the same color as the walls, or cover them with removable curtains or screens. Cover knobs with cloth the same color as the door or use childproof knobs.
• This can be as simple as a bell placed above a door or as sophisticated as an electronic home alarm.
• Provide supervision.
  Never lock the person with dementia in at home alone or leave him or her in a car without supervision.
• Keep car keys out of sight.
  A person with dementia may drive off and be at risk of potential harm to themselves or others.
• If night wandering is a problem:
  Make sure the person has restricted fluids two hours before bedtime and has gone to the bathroom just before bed. Also, use night lights throughout the home.

Make a plan

The stress experienced by families and caregivers when a person with dementia wanders and becomes lost is significant. Have a plan in place beforehand, so you know what to do in case of an emergency.

• Keep a list of people to call on for help.
  Have telephone numbers easily accessible.

  When someone with dementia is missing:

  Begin search-and-rescue efforts immediately. Ninety-four percent of people who wander are found within 1.5 miles of where they disappeared.
• Ask neighbors, friends and family to call if they see the person alone.
• Keep a recent, close-up photo and updated medical information on hand to give to police.
• Know your neighborhood.
  Pinpoint dangerous areas near the home, such as bodies of water, open stairwells, dense foliage, tunnels, bus stops and roads with heavy traffic.
• Is the individual right or left-handed?
  Wandering generally follows the direction of the dominant hand.
• Keep a list of places where the person may wander.
  This could include past jobs, former homes, places of worship or a restaurant.
• Provide the person with ID jewelry.
  Enroll the person in MedicAlert^®+ Alzheimer's Association Safe Return^®.
• Consider having the person carry or wear an electronic tracking GPS device that helps manage location.
  Comfort Zone^® and Comfort Zone Check-In^® are two options.
• If the person does wander, search the immediate area for no more than 15 minutes.
  Call "911" and report to the police that a person with Alzheimer's disease — a "vulnerable adult" — is missing. A Missing Report should be filed and the police will begin to search for the individual. In addition, a report should be filed with MedicAlert+ Alzheimer's Association Safe Return at 1.800.625.3780. First responders are trained to check with MedicAlert+ Alzheimer's Association Safe Return when they locate a missing person with dementia. You do not need to be enrolled in MedicAlert+ Alzheimer's Association Safe Return in order to file a missing report.

WOMEN AND CAREGIVING - FACTS AND FIGURES

Who Are the Caregivers?

Most older persons with long-term care needs—65%—rely exclusively on family and friends to provide assistance.¹ Another 30% will supplement family care with assistance from paid providers.² Care provided by family and friends can determine whether older persons can remain at home. In fact, 50% of the elderly who have a long-term care need but no family available to care for them are in nursing homes, while only 7% who have a family caregiver are in institutional settings.³

Within our complex system of long-term care, women’s caregiving is essential in providing a backbone of support. In fact, the value of the informal care that women provide ranges from $148 billion to $188 billion annually.⁴ Women provide the majority of informal care to spouses, parents, parents-in-law, friends and neighbors, and they play many roles while caregiving—hands-on health provider, care manager, friend, companion, surrogate decision-maker and advocate.⁵

Many studies have looked at the role of women and family caregiving. Although not all have addressed gender issues and caregiving specifically, the results are still generalizable to women because they are the majority of informal care providers in this country. Consider:

• An estimated 66% of caregivers are female. [Updated February 2015] ^{6, 7}
• The average caregiver is a 49 year old woman, caring for her 60 year old mother who does not live with her. She is married and employed. [Updated Februrary 2015] ⁸
• Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.⁹

Women’s Long-Term Care Needs

Women are the major providers of long-term care in this country, but they also have long-term care needs of their own. Women live longer than men, tend to outlive their spouses, and have less access to retirement savings such as pensions. In 2010, almost eight percent of all women were age 65 or older¹⁰ [Updated February 2015]. A common scenario is an older woman who cares for her husband and who discovers that there are few resources—financial or otherwise—to meet her own needs for assistance. For example:

• Women who were 65 in the year 2014 can expect to live another 24 years to age 86.¹¹ [Updated February 2015]
• In 2005, almost half (48%) of women age 75+ were living alone; compared to less than one quarter (22%) of men.¹² [Updated February 2015]
• In 2005, one in nine older women aged 75+ and one in five aged 85 or older, needed assistance with daily activities.¹³ [Updated February 2015]
  

Women, Work and Caregiving

The number of working women age 55 and older is projected to increase by 52% between 2000 and 2010, from 6.4 million to 10.1 million.¹⁴As workforce participation increases, caregiving could pose even greater financial challenges for many women workers, due mostly to lost wages from reduced work hours, time out of the workforce, family leave or early retirement.
This time out of the workforce for caregiving may compound the impact of earlier leave taken to care for a child. Further, caregiving is expensive in and of itself. Whether it’s paying for prescription medications, installing a ramp for a wheelchair-bound care recipient, or purchasing consumable supplies, caregiving has a significant economic impact on a family. Women who are family caregivers are 2.5 times more likely to than non-caregivers to live in poverty and five times more liekly to recieve Supplemental Security Income (SSI).¹⁵ [Updated February 2015]. Furthermore, a 2011 study by MetLife found that 23% of non-working and 20%of working female caregivers are providing financial assistance to parents that they are caring for.¹⁶[Updated February 2015]

While the costs of providing care are high, the demands on caregivers’ time are also substantial. Estimates indicate that some 20 percent of all female workers in the United States are family caregivers.¹⁷ [Updated February 2015]. But women don’t abandon their caregiving responsibilities because of employment. Instead, they cope—to the best of their abilities—with the combined pressures of caring for a loved one, their need for income, reliance on often inadequate public programs and fewer employment-related benefits.¹⁸ Unmarried women caregivers may have even fewer options for balancing work and caregiving.¹⁹

One national study on women and caregiving highlighted the conflicting demands of work and eldercare. The study found that:²⁰

• 33% of working women decreased work hours
• 29% passed up a job promotion, training or assignment
• 22% took a leave of absence
• 20% switched from full-time to part-time employment
• 16% quit their jobs
• 13% retired early

Other research paints a similar picture. For example:

• The negative impact on a caregivers retirement fund is approximately $40,000 more for women than it is for men.²¹ [Updated Februrary 2015]
• More intense caregiver responsibilities tend to have a greater impact on the odds of retiring. Women who provide assistance to multiple family members or friends have 50% higher odds of retiring than non-caregiving women.²²
• Caregiving reduces paid work hours for middle aged women by about 41 percent. ²³ [Updated Februrary 2015]
• In total, the cost impact of caregiving on the individual female caregiver in terms of lost wages and Social Security benefits equals $324,044. ²⁴ [Updated Februrary 2015]

Caregiving places a further strain on the precarious nature of many women’s retirement income, particularly since time out of the workforce does not only have short-term financial consequences. For most women, fewer contributions to pensions, Social Security and other retirement savings vehicles are the result of reduced hours on the job or fewer years in the workforce. Women caregivers are:²⁵

• Significantly less likely to receive a pension and, when they do, the pension is about half as much as those that men receive.
• Likely to spend an average of 12 years out of the workforce raising children and caring for an older relative or friend.²⁶

Complicating the picture, researchers have found that women who reduced their work hours while caregiving did not increase work hours once caregiving had stopped.²⁷ Additionally, caregivers who return to full-time employment after caregiving are more likely to: ²⁸

• Earn lower wages
• Have a “benefit-poor” job
• Receive reduced retirement benefits.

Caregiving also has a substantial impact on business. Absenteeism, replacing employees who quit in order to provide care and other caregiving-related activities can have serious financial consequences to employers. For instance:²⁹

• The cost to businesses to replace women caregivers who quit their jobs because of their caregiving responsibilities has been estimated at $3.3 billion.
• Absenteeism among women caregivers due to caregiving responsibilities costs businesses almost $270 million.
• The cost to businesses because of partial absenteeism (e. g., extended lunch breaks, leaving work early or arriving late) due to women’s caregiving has been estimated at $327 million. Caregiving-related workday interruptions add another $3.8 billion to the burden borne by businesses.

Health Consequences of Women’s Caregiving

The toll that caregiving takes is not just financial. Higher levels of depression, anxiety, and other mental health challenges are common among women who care for an older relative or friend. Studies find that men respond to caregiving responsibilities in a fundamentally different way. Women tend to stay home to provide time-consuming care to one or more ill or disabled friends or family members, while men respond to loved one’s needs for support by delaying retirement, in part to shoulder the financial burden associated with long-term care.³⁰The impact of the women’s intensive caregiving can be substantial.

One four-year study found that middle-aged and older women who provided care for an ill or disabled spouse were almost six times as likely to suffer depressive or anxious symptoms as were those who had no caregiving responsibilities.³¹ It’s not only care for a spouse that can affect mental health, however. The same study found that women who cared for ill parents were twice as likely to suffer from depressive or anxious symptoms as noncaregivers.³²

One in five female caregivers age 18 to 39 said that stress was nearly always present in their lives; nearly twice as many as those who were not caregivers and for male caregivers. ³³ [Updated February 2015] The negative impact on carers' relationships and social networks due to their reduced ability to participate in activities outside their caring role can lead to carers' experiencing social isolation, which in turn can impact on their psychological wellbeing. Studies have demonstarted that women are more vulnerable than men to the effect of reduced social support. ³⁴ [Updated February 2015]

A particularly strong factor in determining the mental health impact of providing care is the amount of care per week that a woman provides. One study found a marked increase in risk among women who provided 36 or more hours per week of care to a spouse. Researchers concluded that there may be a threshold of time involvement beyond which the likelihood of mental health consequences rapidly escalates.³⁵

The incidence of symptoms or experiences are not limited to depression. Various studies have identified other common hallmarks of women’s caregiving experience:

• A higher level of hostility and a greater decline in happiness for caregivers of a family member.³⁶
• Greater increases in symptoms of depression, less “personal mastery” and less self-acceptance.³⁷
• High caregiving-related stress.³⁸

Compounding this picture, physical ailments are not uncommon. Researchers found that more than one-third of caregivers provide intense and continuing care to others while suffering from poor health themselves.³⁹ Additionally, a 1999 study indicated that as compared to noncaregivers, women caregivers were twice as likely not to fill a prescription because of the cost (26% vs. 13%).⁴⁰ Elderly women caring for a loved one who has dementia may be particularly susceptible to the negative health effects of caregiving because they receive significantly less help from family members for their own disabilities.⁴¹ To highlight this, a 2003 study found that over one in four (26%) of female caregivers reported fair to poor health compared to 12% of women generally.⁴²  [Updated February 2015]

The physical impact of providing care can lead to long-term care needs for the caregiver. For example:

• A national survey found that 21% of  female carers' had mammograms less often. ⁴³ [Updated February 2015]
• As many as two out of three older women do not take advantage of preventive health services due to lack of information and high out-of-pocket costs.⁴⁴
• 25% of women caregivers have health problems as a result of their caregiving activities.⁴⁵
• Coronary heart disease (CHD) is one physical risk factor of caregiving. Women who spend nine or more hours a week caring for an ill or disabled spouse increase their CHD risk twofold.⁴⁶
• Other health effects include elevated blood pressure and increased risk of developing hypertension; lower perceived health status; poorer immune function; slower wound healing; and an increased risk of mortality.⁴⁷

Despite the physical and emotional tolls of caregiving and risk factors for disease, women caregivers are less likely to have their own health needs met. One study found that women providing care to an ill/disabled spouse were more likely to report a personal history of hypertension, diabetes and hypercholesterolemia. These same caregivers were also slightly more likely to smoke and consume more saturated fat.⁴⁸ Additionally, compared to non-caregiving women: ⁴⁹

• 25% (vs. 17%) rated their own health as fair or poor
• 54% (vs. 41%) had one or more chronic health conditions
• 51% (vs. 38%) exhibited depressive symptoms
• 16% (vs. 8%) were twice as likely in the past year not to get needed medical care
• 25% (vs. 16%) had difficulty getting medical care

It is clear that caregiving can have negative health effects. It is important to note, however, that although caregiving can exact physical, emotional and financial tolls, it can also be rewarding. Some women caregivers:

• Reported a caregiver “gain”: more purpose in life than their noncaregiving women peers.⁵⁰
• Reported beneficial effects including more autonomy, more personal growth and more self-acceptance when caring for friends.⁵¹

Minority and Low-Income Caregivers

Minority and low-income caregivers may face additional challenges. The poverty rate for single African American women over the age of 65 is 30.7%, for single Hispanic women it is 40.8% .⁵² [Updated February 2015] For these caregivers, accessing paid sources of care may be particularly difficult. In fact, lower-income caregivers are half as likely as higher-income caregivers to have paid home health care or assistance available to provide support for and relief from their caregiving functions.⁵³

• One study concluded that the caregiving time burden falls most heavily on lower-income women: 52% of women caregivers with incomes at or below the national median of $35,000 spend 20+ hours each week providing care.⁵⁴

Support Systems for Women Caregivers

Because of the multi-faceted role that family and informal caregivers play, they need a range of support services to remain healthy, improve their caregiving skills and remain in their caregiving role. Caregiver support services include information, assistance, counseling, respite, home modifications or assistive devices, support groups and family counseling. While many services are available through local government agencies, service organizations, or faith-based organizations, employers are beginning to implement workplace support programs as one way to mitigate the impact that caregiving can have on workers.

Frequently, support services can make a real difference in the day-to-day lives of caregivers. Research has shown, for example, that counseling and support groups, in combination with respite and other services, have positive direct effects on health behavior practices ⁵⁵[Updated February 2015] and assist caregivers in remaining in their caregiving role longer, with less stress and greater satisfaction. In fact, women are more than twice as likely as men to say that they would benefit from talking to someone about their caregiving experience.⁵⁶ Further, some studies have shown that actual linkages to services in lieu of information-only programs are more beneficial to caregivers.⁵⁷Because women’s labor force participation continues to grow, employer-sponsored programs will become an increasingly vital resource for women who both work and provide care to a loved one.

 

References

¹ U.S. Administration on Aging. (2000, Fall). America’s families care: A report on the needs of America’s family caregivers. Retrieved (March 26, 2003) from http://www.aoa.gov/carenetwork/report.html
² Ibid.
³ Ibid.
⁴ Calculation based on estimates of women caregivers as a percentage of all caregivers ranging from 59% to 75% and findings from: Arno, P. S. (2002, February). The economic value of informal caregiving, U.S., 2000. Paper presented at the annual meeting of the American Association for Geriatric Psychiatry, Florida.
⁵ Navaie-Waliser, M., Feldman, P. H., Gould, D. A., Levine, C. L., Kuerbis A. N., & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92(3),
409–413.
⁶ The National Alliance for Caregiving and AARP. (2009). Caregiving in the U.S. National Alliance for Caregiving. Washington, D.C.
⁷ Ibid.
⁸ AARP (2011). Valuing the Invaluable 2011 update.. Retrieved (January 10, 2015) from http://assets.aarp.org/rgcenter/ppi/ltc/fs229-ltc.pdf
⁹ Family Caregiver Alliance. (2001). Selected Caregiver Statistics (Fact Sheet). San Francisco, CA: Author.
¹⁰ U.S. Census Bureau. (2010, March). The Older Population: 2010. Retrieved (January, 2015) fromhttp://www.census.gov/prod/cen2010/briefs/c2010br-09.pdf
¹¹ Social Security Administration. (2014). Calculators: Life Expectancy. Retrieved (January 2015) fromhttp://ssa.gov/planners/lifeexpectancy.htm
¹² AARP Public Policy Institute. (2002). Women and long-term care (Fact Sheet). Washington, DC: Gregory, S. R., & Pandya, S. M.
¹³ AARP Public Policy Institute. (2005) National Health Interview Survey. Retrieved (January 2015) from http://www.aarp.org/home-garden/livable-communities/info-2007/fs77r_ltc.html
¹⁴ Francese, P. (2003, March). Trend ticker: Investing in demographics. American Demographics.
¹⁵ Rice University. (2004). Rice University Sociologists Calculate Caregivers Risk of Living in Poverty. Retrieved (February 2015) from http://news.rice.edu/2004/08/16/rice-university-sociologists-calculate-caregivers-risk-of-living-in-poverty/
¹⁶ MetLife (2011) The MetLife Study of Caregiving Costs to Caregivers. Retrieved (January 2015) from http://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-working-caregivers.pdf
¹⁷ AARP. (2012). Understanding the Impact of Family Caregiving on Work. Retrieved (January 2015) fromhttp://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2012/understanding-impact-family-caregiving-work-AARP-ppi-ltc.pdf
¹⁸ Pavalko, E. K., & Artis, J. E. (1997). Women’s caregiving and paid work: Causal relationships in late midlife. Journal of Gerontology: Social Sciences, 52B(4), 170–179.
¹⁹ Ibid.
²⁰ MetLife Mature Market Institute, National Alliance for Caregiving, & The National Center on Women and Aging. (1999, November). The Metlife juggling act study: Balancing caregiving with work and the costs involved.
²¹ MetLife (2011) The MetLife Study of Caregiving Costs to Caregivers. Retrieved (January 2015) from http://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-working-caregivers.pdf
²²  Dettinger, E., & Clarkberg, M. (2002). Informal caregiving and retirement timing among men and women: Gender and caregiving relationships in late midlife. Journal of Family Issues, 23(7), 857–879
²³ Johnson, R. & Sasso, L. (2006) The Impact of Elder Care on Women's Labor Supply. Inquiry 43: 195-210. 2006.
²⁴ MetLife (2011) The MetLife Study of Caregiving Costs to Caregivers. Retrieved (January 2015) from http://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-working-caregivers.pdf
²⁵ Older Women’s League. Women and long-term care. Retrieved (April 7, 2003) from http://www.owl-national.org
²⁶ Social Security Administration. (2002, February). Women and Social Security (Fact Sheet). Washington, DC: Author.
²⁷ Pavalko, E. K., & Artis, J. E. (1997). Women’s caregiving and paid work: Causal relationships in late midlife. Journal of Gerontology: Social Sciences, 52B(4), 170–179.
²⁸ Dettinger, E., & Clarkberg, M. (2002). Informal caregiving and retirement timing among men and women: Gender and caregiving relationships in late midlife. Journal of Family Issues, 23(7), 857–879.
²⁹ Metropolitan Life Insurance Company, & National Alliance for Caregiving. (1997, June). The Metlife study of employer costs for working caregivers. Connecticut: Metropolitan Life Insurance Company.
³⁰ Dettinger, E., & Clarkberg, M. (2002). Informal caregiving and retirement timing among men and women: Gender and caregiving relationships in late midlife. Journal of Family Issues, 23(7), 857–879.
³¹ Press Release (2002, August). Reverberations of family illness: A longitudinal assessment of informal caregiving and mental health status in the nurses’ health study. American Journal of Public Health.
³² Ibid.
³³ MetLife Mature Market Institute, National Alliance for Caregiving & University of Pittsburgh Institute on Aging (2010). The MetLife Study of Working Caregivers and Employer Health Care Costs: New Insights and Innovations for Reducing Health Care Costs for Employers.
³⁴ Womens Health Victoria (2008) Women and Informal Caregiving. Retrieved (January 2015) fromhttp://whv.org.au/static/files/assets/2aaa851d/Women_and_informal_caregiving_GIA.pdf 
³⁵ Press Release (2002, August). Reverberations of family illness: A longitudinal assessment of informal caregiving and mental health status in the nurses’ health study. American Journal of Public Health
³⁶ Marks, N. Lambert, J. D., & Choi, H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective U.S. national study. Journal of Marriage and Family, 64, 657–667.
³⁷ Ibid.
³⁸ Gallant, M. P., & Connell, C. M. (1998). The stress process among dementia spouse caregivers: Are caregivers at risk for negative health behavior change? Research on Aging, 20(3), 267–297.
³⁹ Navaie-Waliser, M., Feldman, P. H., Gould, D. A., Levine, C. L., Kuerbis A. N., & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92(3), 409–413.
⁴⁰ The Commonwealth Fund. (1999, May). Informal caregiving (Fact Sheet). New York: Author.
⁴¹Langa, K. M., Chernew, M. E., Kabeto, M. U., Herzog, A. R., Ofstedal, M. B., Willis, R. J., et al. (2001). National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine, 16(11), 770–778.
⁴² Austrailian Bureau of Statistics (2004) Disability, Aging and Carers Australia: Summary of Findings.
⁴³ National Alliance for Caregiving & Evercare. (2006) Evercare Study of Caregiversin Decline: A Close-up Look at the Health Risks of Caring for a Loved One.
⁴⁴ U.S. Administration on Aging. (2000). Older Women (Fact Sheet). Retrieved (April 3, 2003) fromhttp://www.aoa.gov/naic/may2000/factsheets/olderwomen.html
⁴⁵ Older Women’s League. Women and long-term care. Retrieved (April 3, 2003) from http://www.owl-national.org
⁴⁶ Lee, S. L., Colditz, G. A., Berkman, L. F., & Kawachi, I. (2003). Caregiving and risk of coronary heart disease in U.S. women: A prospective study. American Journal of Preventive Medicine, 24(2), 113–119.
⁴⁷ Ibid.
⁴⁸ Ibid.
⁴⁹ The Commonwealth Fund. (1999, May). Informal caregiving (Fact Sheet). New York: Author.
⁵⁰ Marks, N. Lambert, J. D., & Choi, H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective U.S. national study. Journal of Marriage and Family, 64, 657–667.
⁵¹ Ibid.
⁵²Administration on Aging (2011) Profile of Older Americans. Retrieved (January 2015) fromhttp://www.aoa.gov/Aging_Statistics/Profile/2011/docs/2011profile.pdf
⁵³ The Commonwealth Fund. (1999, May). Informal caregiving (Fact Sheet). New York: Author.
⁵⁴ Ibid.
⁵⁵ Corry, M. While, A., Neenan, K. & Smith, V. (2014) A Systematic Review of Intervention for Caregivers of People with Chronic Conditions. Retrieved (January 2015) from http://onlinelibrary.wiley.com/doi/10.1111/jan.12523/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false
⁵⁶ National Alliance for Caregiving, & AARP. (1997). Family Caregiving in the US: Findings from a national survey. Washington, DC: National Alliance for Caregiving & AARP.
⁵⁷ Whittier, S., Coon, D., & Aaker, J. (2002, April). Caregiver support interventions (Research Brief No. 10). Washington, DC: National Association of State Units on Aging.

Resources

Family Caregiver Alliance
785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388 l (800) 445-8106
Website: caregiver.org
E-mail: info@caregiver.org

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

FCA's National Center on Caregiving offers advice and information on current social, public policy and caregiving issues and provides assistance in the development of public and private caregiver support programs.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, ALS, brain injury, Parkinson's and other chronic health conditions that strike adults.

This fact sheet was prepared by the National Center on Caregiving at Family Caregiver Alliance and was reviewed by Phyllis Mutschler, Ph.D., Executive Director, National Center on Women and Aging, Brandeis University. Funded by the Archstone Foundation. May 2003 © Family Caregiver Alliance. All rights reserved.

STAGES OF DEMENTIA

(alzheimers.net)

What are the 7 stages of  Alzheimer's Disease?

Every person with Alzheimer’s disease experiences the disease differently, but patients tend to experience a similar trajectory from the beginning of the illness to its merciful end. The precise number of stages is somewhat arbitrary. Some experts use a simple three-phase model (early, moderate and end), while others have found a granular breakdown to be a more useful aid to understanding the progression of the illness.

The most common system, developed by Dr. Barry Reisberg of New York University, breaks the progression of Alzheimer’s disease into seven stages. This framework for understanding the progression of Alzheimer’s disease has been adopted and used by a number of healthcare providers as well as the Alzheimer’s Association.

Here is summary of the seven stages of Alzheimer’s disease based on the ideas of Dr. Resiberg:

Stage 1: No Impairment

During this stage, Alzheimer’s disease is not detectable and no memory problems or other symptoms of dementia are evident.

Stage 2: Very Mild Decline

The senior may notice minor memory problems or lose things around the house, although not to the point where the memory loss can easily be distinguished from normal age related memory loss. The person will still do well on memory tests and the disease is unlikely to be detected by physicians or loved ones.

Stage 3: Mild Decline

At this stage, the friends and family members of the senior may begin to notice memory and cognitive problems. Performance on memory and cognitive tests are affected and physicians will be able to detect impaired cognitive function.

Patients in stage 3 will have difficulty in many areas including:

• finding the right word during conversations
• remembering names of new acquaintances
• planning and organizing

People with stage three Alzheimer’s may also frequently lose personal possessions, including valuables.

Stage 4: Moderate Decline

In stage four of Alzheimer’s disease clear cut symptoms of Alzheimer’s disease are apparent. Patients with stage four Alzheimer’s disease:

• Have difficulty with simple arithmetic
• May forget details about their life histories
• Have poor short term memory (may not recall what they ate for breakfast, for example)
• Inability to manage finance and pay bills

Stage 5: Moderately Severe Decline

During the fifth stage of Alzheimer’s, patients begin to need help with many day to day activities. People in stage five of the disease may experience:

• Significant confusion
• Inability to recall simple details about themselves such as their own phone number
• Difficulty dressing appropriately

On the other hand, patients in stage five maintain a modicum of functionality. They typically can still bathe and toilet independently. They also usually still know their family members and some detail about their personal histories, especially their childhood and youth.

Stage 6: Severe Decline

Patients with the sixth stage of Alzheimer’s disease need constant supervision and frequently require professional care. Symptoms include:

• Confusion or unawareness of environment and surroundings
• Major personality changes and potential behavior problems
• The need for assistance with activities of daily living such as toileting and bathing
• Inability to recognize faces except closest friends and relatives
• Inability to remember most details of personal history
• Loss of bowel and bladder control
• Wandering

Stages 7: Very Severe Decline

Stage seven is the final stage of Alzheimer’s disease. Because Alzheimer’s disease is a terminal illness, patients in stage seven are nearing death. In stage seven of the disease, patients lose ability to respond to their environment or communicate. While they may still be able to utter words and phrases, they have no insight into their condition and need assistance with all activities of daily living. In the final stages of the illness, patients may lose their ability to swallow.

The 7 Stages of Dementia Global Deterioration Scale The Global Deterioration Scale (GDS), developed by Dr. Barry Reisberg, provides caregivers an overview of the stages of cognitive function for those suffering from a primary degenerative dementia such as Alzheimer's disease.

It is broken down into 7 different stages. Stages 1-3 are the pre-dementia stages.

Stages 4-7 are the dementia stages.

Beginning in stage 5, an individual can no longer survive without assistance.

Within the GDS, each stage is numbered (1- 7), given a short title (i.e., Forgetfulness, Early Confusional, etc followed by a brief listing of the characteristics for that stage.

Caregivers can get a rough idea of where an individual is at in the disease process by observing that individual's behavioral characteristics and comparing them to the GDS. (From geriatric- resources) _____________________________

The Global Deterioration Scale for Assessment of Primary Degenerative Dementia Level 1 � NO COGNATIVE DECLINE: No subjective complaints of memory deficit.

No memory deficit evident on clinical interview.

Level 2 � VERY MILD COGNATIVE DECLINE (Age Associated Memory Impairment): Subjective complaints of memory deficit, most frequently in following areas:

(a) forgetting where one has placed familiar objects;

(b) forgetting names one formerly knew well.

No objective evidence of memory deficit on clinical interview.

No objective deficits in employment or social situations.

Appropriate concern with respect to symptomatology.

Level 3 � MILD COGNATIVE DECLINE (Mild Cognitive Impairment): Earliest clear-cut deficits.

Manifestations in more than one of the following areas:

(a) patient may have gotten lost when traveling to an unfamiliar location;

(b) co-workers become aware of patient's relatively poor performance;

(c) word and name finding deficit becomes evident to intimates;

(d) patient may read a passage or a book and retain relatively little material;

(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;

(f) patient may have lost or misplaced an object of value;

(g) concentration deficit may be evident on clinical testing.

Objective evidence of memory deficit obtained only with an intensive interview.

Decreased performance in demanding employment and social settings.

Denial begins to become manifest in patient.

Mild to moderate anxiety accompanies symptoms.

Level 4 � MODERATE COGNITIVE DECLINE (Mild Dementia):

Clear-cut deficit on careful clinical interview.

Deficit manifest in following areas: (a) decreased knowledge of current and recent events;

(b) may exhibit some deficit in memory of ones personal history;

(c) concentration deficit elicited on serial subtractions;

(d) decreased ability to travel, handle finances, etc.

Frequently no deficit in following areas:

(a) orientation to time and place;

(b) recognition of familiar persons and faces;

(c) ability to travel to familiar locations.

Inability to perform complex tasks.

Denial is dominant defense mechanism.

Flattening of affect and withdrawal from challenging situations frequently occur.

Level 5 � MODERATELY SEVERE COGNITIVE DECLINE (Moderate Dementia): Patient can no longer survive without some assistance.

Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated.

Frequently some disorientation to time (date, day of week, season, etc.) or to place.

An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s.

Persons at this stage retain knowledge of many major facts regarding themselves and others.

They invariably know their own names and generally know their spouses' and children's names.

They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6 - SEVERE COGNITIVE DECLINE (Moderately Severe Dementia): May occasionally forget the name of the spouse upon whom they are entirely dependent for survival.

Will be largely unaware of all recent events and experiences in their lives.

Retain some knowledge of their past lives but this is very sketchy.

Generally unaware of their surroundings, the year, the season, etc.

May have difficulty counting from 10, both backward and, sometimes, forward.

Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will be able to travel to familiar locations.

Diurnal rhythm frequently disturbed.

Almost always recall their own name.

Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment.

Personality and emotional changes occur.

These are quite variable and include:

(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;

(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;

(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;

(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

Level 7 - VERY SEVERE COGNITIVE DECLINE (Severe Dementia): All verbal abilities are lost over the course of this stage.

Frequently there is no speech at all -only unintelligible utterances and rare emergence of seemingly forgotten words and phrases.

Incontinent of urine, requires assistance toileting and feeding. Basic psychomotor skills, e.g., ability to walk, are lost with the progression of this stage.

The brain appears to no longer be able to tell the body what to do.

Generalized rigidity and developmental neurologic reflexes are frequently present. __________________

The alzheimers association now has a plain English version of the seven stages, available at http://www.alz.org/AboutAD/Stages.asp

From Act mental health consultants-- A simplified version of 7 stages. Seems to describe the problems and care requirements seen in the nursing home. Very understandable.

Also gives range of time duration for each stage. http://www.actmentalhealth.com/News%202000,%2011-12.htm __________________

By the way, most doctors do not bother trying to determine the stage the person is in - except that they might indicate mild, moderate or severe.

The doctors are more interested in treating the individual patient and the problems he/she is having at the time of the visit.

They find no value in staging the dementia patient.

Caregivers tend to want the staging system to get an idea of where their LO is in the process and what lies ahead. -----------------------------------------

A simplified checklist version of the seven stages is the Functional Assessment Staging Test (FAST).

Note that stages 6 and 7 are broken down into smaller steps.

1 No difficulties, either subjectively or objectively

2 Complains of forgetting location of objects; subjective word finding difficulties only.

3 Decreased job functioning evident to coworkers; difficulty in traveling to new locations.

4 Decreased ability to perform complex tasks (e.g., planning dinner for guests; handling finances; marketing).

5 Requires assistance in choosing proper clothing for the season or occasion.

6a Difficulty putting clothing on properly without assistance.

6b Unable to bathe properly; may develop fear of bathing. Will usually require assistance adjusting bath water temperature.

6c Inability to handle mechanics of toileting (i.e., forgets to flush; doesn't wipe properly).

6d Urinary incontinence, occasional or more frequent. 6e Fecal incontinence, occasional or more frequent.

7a Ability to speak limited to about half a dozen words in an average day.

7b Intelligible vocabulary limited to a single word in an average day.

7c Nonambulatory (unable to walk without assistance).

7d Unable to sit up independently.

7e Unable to smile.

7f Unable to hold head up.

Comment on the FAST by dementia expert Geri Hall "You look for the stage which is the highest number where your person has symptoms because the losses are cumulative.

If a patient is in stage 3, I expect them to have some issues with money, working, driving, shopping, short-term memory, time sense, etc --

In stage 4 I see issues with driving, shopping, cooking, cleaning, doing chores, participating in higher level activities and social affairs.

But the person brings the deficits from stage 3 with them into stage 4. The deficits don't resolve.

And, there are those of us who work with these patients day to day who strongly disagree with several points on the FAST Scale.

The one major issue is bathing. Problems with bathing are the hallmark of the beginnings of stage 5.

G Hall recaps the seven stages --- Problems with driving, managing money, and shopping = stage 3.

If you notice she can't cook, clean, or do the laundry = stage 4.

If she requires help (or strong encouragement to bathe, clean her teeth, or select different clothing each day = stage 5.

If she has trouble with falling or bowel and bladder control and/or falling, she is in stage 6.

If she can no longer walk, stage 7.

The losses are cumulative and not every patient has exactly the same losses.