DNR Codes and Levels of Care – Understand Before They’re Needed

Many family caregivers of seniors will, at some point, have to answer the question “does your loved one have a DNR?

Too often that question will come at a stressful time, during a medical emergency.

What does that mean?” you may ask.

You won’t have to ask that, though, after you read this article.

DNR (Do Not Resuscitate), often referred to as “no code,” is an advance directive document that guides medical personnel to NOT perform CPR or otherwise try to revive your loved one if their heart is stopped.

If your senior loved one does not have a DNR in place, they are considered to be a full code and will receive all aggressive measures if their heart or breathing stops.

As a family caregiver you might be asked about their code status during an emergency — either full or no code or some level in-between.

A DNR advance directive is used only when the person is unable to communicate their own wishes and someone else needs to step in to direct their care, otherwise they will be asked to direct their care themselves.

CPR, cardiopulmonary resuscitation, is a technique that is used to reestablish a person’s heart rhythm and breathing, shocking the heart back to a normal beating rhythm. It can involve chest compressions, rescue breathing, defibrillation, medicine to stimulate the heart function, mask ventilation and intubation for mechanical breathing (also known as life support).

Details About DNR Orders

A doctor is required to sign a DNR advance directive to be placed in your senior loved ones medical record, unlike a living will which requires a signature of the person involved and possibly a witness. A new DNR is required upon each hospital admission, including transfers between facilities.

It is important to know that many EMS (emergency medical personnel) are not allowed to honor a DNR order unless specific to that state and properly executed. For example, some states have a DNR document for use by EMS and then another one for the hospital.

A physician order for life-sustaining treatment (POLST), which covers out of hospital DNR orders, may be available in your state. There are also bracelets or documents kept on the refrigerator to alert first responders or your senior’s wishes.

More and more people have created advance directives that will dictate what type of care they desire at the end of life. The number of older adults who are executing their advance directives, especially a DNR order, is increasing.

Unfortunately, many have not spelled out their wishes, leaving family caregivers to make these decisions.

DNR Expresses Wishes

A DNR tells the medical team that your senior loved one wants to die naturally without heroic measures of ventilation, intubation, or vasopressor support.

A DNR does not mean “do not treat” if a condition arises that could benefit from treatment such as IV fluids, antibiotics or oxygen.

While age should not be a determining factor in making a decision for a DNR order, for many older adults, particularly those who are already frail, performing CPR can be futile. Even if CPR is effective, the heart or lungs will potentially fail again.

Not only will it possibly not prolong their life, it can be damaging to an older person.

CPR can result in painful injuries or a loss of functional status after the CPR is performed. It is not unusual for fragile senior’s ribs to be broken and damage caused to internal organs during chest compressions. Adverse outcomes, such as hypoxic brain damage and increased physical disability, can result.

One report states that CPR is successful in only 20% of the cases.

Types and Levels of DNR Orders

There are different degrees of medical intervention, depending on the policy of the hospital or nursing home. It is a good idea to ask the facility for their policy regarding different levels of DNR care so you clearly understand the process when needed.

Some facilities use terms to describe how they handle DNR levels such as:

  • comfort care – only comfort will be given in the event a person’s heart stops beating
  • comfort care arrest – may use life-saving measures before the heart stops beating but only comfort measures once it stops
  • specified – written by doctor, dictates which methods can or can not be used, such as Do Not Intubate but can do chest compressions

Other facilities, especially long term care facilities, can define different levels of treatment in the event that a medical emergency occurs. You might see something like this in your care home.

Level 1:  Stay in the facility and be kept comfortable, but not given antibiotics or other medications to cure you.

Level 2:  Stay in the facility and receive all medications and treatments possible within the facility.

Level 3:  Be transferred to a hospital from a nursing facility but not given CPR or taken to intensive care.

Level 4:  Be taken to a hospital and given all possible medical interventions. Do everything possible.

Level 1 and 2 allow someone to die naturally in familiar surroundings.

Some states may use different terms such as these:

AND – Allow natural death, used in end of life situations to be clear that an end is anticipated and the natural consequences of the condition are allowed to proceed

DNAR – Do not attempt resuscitation, this should be accompanied by specifics of which forms of interventions can or can not be used if the heart ceases beating

We prepared a Types and Levels printable version for use in speaking with senior loved ones and to keep handy should it be needed in the nursing home or hospital.

Executing Advance Directives

These documents should be executed and a healthcare power of attorney designated well before they are needed. During a medical crisis our senior loved ones may not be able to communicate their wishes to the healthcare team or family members and it will be too late.

An established healthcare power of attorney can make these decisions on one’s behalf following their advance directives.

It is a good idea to be sure that any power of attorney has been briefed about wishes and has a copy of the advance directives.

All family members should know who the power of attorney is so that there will be no confusion when the times comes that decisions are needed.

Your senior’s advance directives can be changed at any point in time if there are changes in their desires or the person they wish to make decisions on their behalf.

This can be a sad and uncomfortable topic to think about and discuss with our loved ones, but dying with dignity can be achieved when our healthcare wishes are expressed, no matter what our senior loved ones decide.

Moving More Than Furniture – Legal Transitions for Relocating Seniors

Seniors in search of a life nearer their kids or grandkids often end that search with a move to a new home.

Finding a home that will meet their needs as they age could mean downsizing.

When seniors are seeking a home that is more manageable, age-friendly, or comes with new scenery, they might find what they want in a different state.

Moving to a warmer climate, one that doesn’t require snow removal to get milk or even just the mail, is often a decision in the best interest of our senior loved one. Being afraid of slipping on the ice can result in isolation to avoid taking chances in the winter weather.

Sometimes living in the Deep South is not the healthiest option either, especially if the family is not nearby. Extreme heat can be just as isolating as extreme cold.

What do we need to think about when we move from one state to another besides the change in the weather?

Moving Changes

When seniors move there are many details that come along with an out of state move that could affect them differently than if a younger person were to move to a new location.

When we move we know that there are many and often frustrating changes need to occur to make us true residents of our new state no matter what our age.

  • Changing our address with everyone we know not just family but magazines, credit card, voters registration and all other places that have our current address
  • Connecting to new providers for water, electric, cable, newspaper and telephone
  • Finding new doctors, dentists, eye doctors, specialists, hospitals and veterinarians that you trust
  • Locating a new church or other faith organization and becoming a member
  • Picking a grocery store and pharmacy that meet our needs and preferences
  • Obtaining your driver’s license and updating your passport and other forms of ID

How about moving changes that are specific to older adults?

Legal Considerations for Moving Seniors

When seniors move from one state to another, many of their legal choices that they have put in writing may have to be updated.

Certain legal decisions have regional rules and statutes that differ from one state to another. It is very important for seniors to get these legal documents updated. You might consider using an elder law attorney who specializes in these state rules and regulations as quickly as possible in case they are needed fast.

Let’s take a look at some of the areas that should be reviewed when senior loved ones change states.

  1. Advance directives – having advance directives, including a living will, trusts, do not resuscitate orders, or power of attorney for healthcare documentation is a fabulous plan. However, various states have different rules about advance directives. If your senior’s forms are not in compliance with the state where they now reside, it could result in lack of desired treatment or healthcare professionals being unable to follow their wishes in an emergency.
  2. Medicaid – This is a government program but run by each state and their governing rules, which vary. If your senior is receiving Medicaid, they will need to meet the requirements of their new state. Federal requirements apply to all states but some state by state guidelines such as amounts of gifts, Medicaid annuities and exemption for personal residences may be different. There may be a waiting list in the new state for coverage.
  3. Executor or Proxy – if your senior has named a person to be their proxy for healthcare or finances or the executor of their will because they lived nearby and now they don’t, it might be time to reassess whether that person is still willing and able to act as executor or proxy.
  4. Financial institutions – it is important that all financial institutions are notified of your senior’s out of state move. This includes retirement plan, IRA’s, CD’s, bank accounts, savings bonds, money market funds, stock ownership, VA benefits, credit union accounts and mortgages. Family caregivers should know where all the sources of finances can be found in case they need to file for Medicaid or VA benefits or any government assistance for their seniors to verify eligibility. If the financial institution does not have the current address, the account could be forgotten and the money lost.
  5. Pre-paid burial arrangements – if your senior loved one has created a burial plan in the state where they were residents but no longer wish to be interred in their former state, they will need to change those pre-paid arrangements and set up a new plan.
  6. Locate documents – when moving out of state it is important to protect all documents (when not stored electronically) that will be needed, such as tax records, vehicle titles, deeds, advance directives, contracts, marriage certificate, military service record, passport, stock certificates, all insurance policies, Social Security and insurance cards, organ donor card, end of life wishes documents such as the Five Wishes or POLST, and divorce papers and keep them safe and accessible for family caregivers.
  7. Safe deposit boxes – it shouldn’t be forgotten to transfer all safe deposit box contents to the new state. Important documents and belongings may be stored here and potentially forgotten if the safe deposit box opened years before is left behind.
  8. Property – if your senior will still own property in another state after they move, they should check with an attorney because there may be rules that now pertain to them with regard to ownership now that they are legal residents of a different state.

Even the most well planned estate and legal documentation will need to be updated when there is an out of state move.

Don’t Risk Shortcuts

Many documents such as advance directives, wills and trusts should be reviewed every few years whether there was a move or not in case laws have changed making those documents invalid.

It is valuable to have your senior’s legal affairs reviewed by an elder law attorney or an estate planning attorney, not just a general practitioner, to be sure they are covered in the event of any emergency or change in their status requiring someone else to step in on their behalf.

When we move, changing the electric or water is the easy part. Remembering to update legal documents and keep track of financial assets may not always be done.

Getting all our valuable and important legal issues updated should be a priority so our seniors don’t lose any assets or invalidate their wishes.

Then they can start to enjoy their new home!

Advance Directives: Healthcare Proxy Selection and Responsibilities

The National Healthcare Decision Day campaign and others encouraging us, including our senior loved ones, to make our decisions known has resulted in many of us executing these documents.

It is estimated there has been an increase of 25% in completion rates for advance directives.

We’re encouraged by that progress!

The more we learn about advance directives and become comfortable talking about them, the more likely it is that we will complete them.

It is important for us to put in writing what we envision to be our end of life and who we want to express our end of life wishes and advocate for us if we are unable to do so.

Our healthcare proxy is an important person in this process.

A Pew Research Study found that only 29% of the population has completed advance directives, sometimes called DNRs, but 70% of older adults have done so. One study found that durable powers of attorney for healthcare were more often completed than living wills.

When we put our decisions or wishes into documents, we are expecting that our wishes will be carried out accordingly.

What happens if that is not the case because there was some kink in the works or a loophole that goes unfilled?

Who Should Be Your HealthCare Proxy?

Your senior loved one’s healthcare proxy or healthcare power of attorney is the person who will advocate for him when he is medically unable to advocate for himself.

When deciding on the best person to be your senior’s healthcare proxy, it is important to consider someone who is willing and able to direct the healthcare team to ensure that their directives are indeed carried out as they wish.

The person could be someone in your senior’s immediate family such as a spouse or child. In the absence of that person, you can empower anyone with this responsibility.

This person will speak for your senior when she cannot, therefore should be someone the senior trusts who knows their mindset about how care should be provided either in an emergency situation or at the end of life.

Advance Directives Legal Documents

When you or your senior create advance directives, including naming a healthcare proxy, it is important to fill out the appropriate document. Each state has a different form and requirements for these legal documents.

You and your senior can complete the forms together or seek help from an elder law attorney specializing in these forms in your state.

Your senior must be considered of sound mind when creating these directives. That is why we encourage them to complete legal documents while they are still clearly legally able to state their wishes and designate a power of attorney for their healthcare decisions.

Be aware that if your senior has not completed advance directives and therefore no one is legally able to advocate for their wishes, the state may step in and make decisions on their behalf that are not consistent with what they would want done.

The right to make decisions for your senior if no one was designated starts with spouse, child older than 18, parent, and sibling older than 18 according to the state’s default surrogate consent statutes.

Designated Next of Kin

If your senior loved one has not designated someone able to carry out their wishes as a healthcare proxy, only immediate family will be able to make decisions for them under the law in most states.

If your senior recognizes someone as the next of kin who is not an immediate family member and has not named them in a living will or other advance directive, that person likely won’t be able to legally direct care consistent with those wishes.

A new study found that one out of ten veterans surveyed picked someone other than family to be their next of kin.

The concern over this new trend is that it could delay medical treatment, leading to poor outcomes for some seniors.

If there is confusion about who can legally make the crucial decisions needed, it could easily delay care. Also, in the absence of a DNR order or other advance directives, a legal next of kin could be asked to make decisions for a person about whom they know little or with whom they have not even interacted for some time.

They may not be involved in or knowledgeable about which decisions the senior would desire.

Who were unrelated next of kin chosen to be healthcare powers of attorney? Many of those surveyed picked a close friend, an unmarried partner, an ex-spouse or a distant relative.

It seems to be a byproduct of a more mobile family dynamic, where we aren’t living in close proximity to our immediate family members.

This raises a question whether the statutes should be modified to take into consideration a more diverse ‘family’ situation. Before that happens, however, we all should be creating our own advance directives and naming the person we feel is the best fit so that a surrogate is not needed. This will reduce confusion about who should make decisions in an emergency and insure that only the person who knows your desires best to make decisions for you.

Decisions a Healthcare Proxy May Be Asked to Make

It might be of interest to those of us who may need to select a healthcare proxy to understand what they might be asked to do so that we can make an informed choice about who to pick.

In the event of a medical emergency, when your senior is unable to express his or her own wishes or decide for himself or herself what should occur, the designated healthcare power of attorney will decide some of the following medical or health related questions:

  • What treatment you should or should not receive including artificial nutrition or chemotherapy
  • Whether life support or heroic measures should be taken or stopped
  • When to give or not give pain medications
  • To which facility you will be transferred
  • Whether or not surgery or other procedures will be performed
  • Should you be resuscitated?
  • Authorize care by other physicians
  • Apply for Medicare or Medicaid or other insurance benefits on your behalf
  • Right to pursue legal action on your behalf regarding health decisions
  • Approve release of medical records
  • Inform family members of condition

That’s a lot of responsibility to place on a person, which is important to know when one’s proxy is being determined.

A healthcare power of attorney cannot make decisions about issues that are not health related.

A proxy should be aware of your senior’s wishes and medical intent so that they can act with full understanding about your wishes and the potential outcomes of the treatments recommended by the healthcare team. Should they be life sustaining at all costs or within reason based on quality of life concerns?

The healthcare proxy needs to have an honest, open discussion with your senior about these matters so that they can make the best decision when the time comes.

Review Advance Directives Periodically

Just because your senior is completing advance directives now doesn’t mean they can’t be changed later. In fact, it is a good idea to review advance directives from time to time to be sure they are still appropriate as written or if they should be updated due to different circumstances, such as divorce or death — or a change in desired wishes.

Perhaps your senior’s stated proxy is now unable to act on her behalf. Maybe the person chosen as the proxy has decided they no longer wish to be the proxy due to health issues, location or time considerations.

Keeping these documents up to date will be important when an emergency requires their use.

Whether your senior has made an advance directive or not, as long as she is able to speak for herself, she will be the one asked to make decisions.

A healthcare power of attorney will only be asked to step in for you when you are unable or incompetent to make your own healthcare decisions.

It is important to make these documents according to the laws in your senior’s state, pick the most worthy person, educate them about medical wishes, and let everyone know what you have decided.

Keeping the advance directives accessible and all the family informed will make it much easier for everyone involved, including the doctor and emergency personnel, so your senior’s wishes will be followed and they will receive the most appropriate medical care, consistent with their wishes.

Helping Your Senior Understand and Prepare for the Rising Cost of Aging

Let’s face it, getting older is expensive.

More and more of our senior loved ones – and even ourselves – are realizing that aging comes with costs, both expected and unexpected, for which we might not be financially prepared.

A recent report by Genworth Research found that 53% of us have not made any financial plans for our retirement and aging needs.


Four out of ten people surveyed expressed regret over the fact that they are not financially ready for retirement.

Is it too late? What can we do to move toward more financial security for our senior loved ones and ourselves?

Why and What Do You Need To Save

Adults in the survey felt that they would need $1.7 million for retirement. Each person is different and will have different financial needs, but that is a pretty big number.

Unfortunately, many of us don’t take into consideration the amount of money we may need for long term health care. Perhaps we think that Medicare will meet our health needs; however, that does not cover all the costs of healthcare we will have.

What expenses should our senior loved ones anticipate as they age?

  • Housing – Very few of us own our homes outright anymore and the figures point to only 30% owning their homes free and clear. Many seniors have taken out home equity loans, reverse mortgages and second mortgages to help pay bills or other financial needs, including helping their children. These extra expenses will make it difficult in retirement when income is reduced or fixed.
  • Medical Expenses – This includes supplemental or long term care insurance payments, co-payments, out-of-pocket expenses, medications and equipment needs. Falling into the doughnut hole can cost a fair amount, though this is supposed to be better controlled under the Affordable Care Act. Dentures, hearing aids and eyeglasses typically aren’t covered by Medicare and will need to be planned into the budget so that they will be available to prevent isolation, malnutrition or depression (not being able to see or hear affects mood and inability to chew their food can lead to health decline).
  • Home Modifications – Changes to their home so that your senior can safely age in place are often not taken into consideration. There may be quick fixes that cost only a small amount of money or there may be large costs required, for wider doorways or ramp installations for example. What about the yearly property taxes on the home in which they wish to live for the years to come? Will they be covered?
  • In-home Medical Care – Many will need help if they want to stay at home when when functional status begins to decline. Getting help performing activities of daily living such as bathing should be planned because it may be more essential than you imagine. Custodial care is not covered under Medicare.
  • Assistance Around the House – There should also be a plan for funding people to help your senior with things like housework, laundry, cooking, delivered meals or other services that support their ability to live at home.
  • Entertainment – Expenses covered such as a movie ticket, getting a haircut or perm, having the newspaper delivered, or getting cable TV? Will they have spending money to buy gifts for grandkids or donate to the church?
  • Senior Living Facility – Financial preparations should be made, even though your senior may not plan – or want – to go there. Your senior may not have a choice if placement is needed. You may not be able to help them or provide twenty four hour care resulting in having to find them alternative living options such as assisted living.
  • Transportation – Costs such as a car, insurance, taxes and vehicle maintenance. Will a new car be needed in the years to come? How about the cost of gas? What if they get into an accident?
  • Home Maintenance – Expense such as home repair, roofing, heating, plumbing and yard work can add up if the home in which your senior lives is older and needs upgrades or repairs. If the heating or air conditioning unit needs to be replaced, will there be adequate funds for that? The mechanical systems of an older home are vulnerable for repair which could be a costly investment in the future.
  • Pre-arranged Burial Needs – While probably not the most enjoyable to consider, these should also be part of a financial plan for aging. No matter what your senior desires be done after they pass, such as where they will be interred and the cost of a funeral, should be planned now.
  • Regular Monthly Bills – This includes items such as utilities like electric, gas, propane, water, sewer, mobile service, and other monthly costs.

Everyone should make a list of the items they anticipate so covering them is part of the financial plan.

Tips for You and Your Senior to Get Retirement Ready

There are some plans that you and your senior can get together now to better prepare for retirement. Here are a few suggestions of things to do.

  1. Set a realistic goal for the amount of money your senior will need in retirement. There are calculators that can help you determine an amount. There is also a replacement formula that can help determine the amount of income needed when they no longer get a paycheck. Many like to use a rule of thumb, to secure 70% of your prior income level for costs of retirement, and then work backward to decide where they stand. It is realized today, though, that needs and calculations are more personal and may not fit a cookie cutter guide. To help them plan for the future, your senior can check their projected income from social security at their website, ssa.gov.
  2. Prepare a will and execute advance directives if your senior has not already done so. Both your senior and you should do this. Caregivers should be sure this is done in case they are unable to continue caregiving.
  3. Consider meeting with a financial planner or elder law attorney, who can give you guidance about retirement planning. They can help determine if enough is being done to prepare financially for retirement or if more financial arrangements are needed and help with plans for success. Perhaps setting up a trust would be beneficial for your senior.
  4. Make a budget now to be able to pay off outstanding bills and reduce spending so that more saving can occur. Help your senior get their finances in order before they bail out the kids or grandkids who, unlike your senior, have time to regain their losses.
  5. Consolidate any outstanding loans to reduce outstanding bills, such as second mortgages, etc. Will it help to pursue refinancing, reverse mortgage or other solutions? Can they pay off mortgage or home equity loans now, should they?
  6. Does your senior have a life insurance policy that can be leveraged?
  7. Is it too late for long term care insurance?
  8. Would it be financially productive to downsize the home now or move to a facility where care needs can best be met?
  9. Is your senior receiving all the benefits to which they are entitled? If not, it is time to pursue benefits via BenefitsCheckup.org.
  10. Roll all your seniors 401K accounts into one, don’t have accounts spread around potentially being forgotten or charged fees that can be avoided.

Depending on your senior’s financial situation, spending habits, and goals for retirement, these suggestions and more can help them be financially ready no matter what the future brings!

When you’ve helped them prepare, don’t forget to do the same for yourself!

Diagnosis Dementia – Should Seniors and Family Caregivers be Told?

A new report by the Alzheimer’s Association has brought some sobering statistics to light.

Statistics that should prompt discussions among seniors, their families — and maybe their doctors.

What would you want for your loved one, family member or yourself if there was medical information to share?

Should the fact that there is no cure for Alzheimer’s disease right now mean that it isn’t important to know the diagnosis?

Would you want the doctor to try to protect your senior loved one by not telling them the truth of their diagnosis or tell them details in an unclear way so that they don’t understand the impact of the diagnosis?

Is it acceptable for the healthcare team to make that decision? Do we have a right to know?

Should the doctor be mandated to tell everyone the truth of their diagnosis? What is their ethical or even moral obligation to a patient?

What if your senior was told but couldn’t recall ever being told?

Facts and Figures Report for 2015

There is a new section in the Facts and Figures Report for Alzheimer’s 2015, Disclosing a Diagnosis of Alzheimer’s Disease, that contains an historical look at telling patients the truth about medical diagnosis as well as specifics about the dementia diagnosis.

The very first line in this section states fewer than 50% of those with Alzheimer’s disease were told their diagnosis. This is based on the Alzheimer’s Association’s commissioned study using Medicare Current Beneficiary Survey (MCBS) information from Medicare claims made for those with a diagnosis of dementia.

A question on the claim survey “Has a doctor ever told you that you have Alzheimer’s disease?” was tabulated. It showed that only 45% diagnosed with Alzheimer’s answered that they had been told their diagnosis and even fewer (27%) with other causes of dementia.

When doctors were polled, many reported that they would disclose the diagnosis of dementia to the caregiver (healthcare proxy) not the person themselves. This could be related to the stage at which the disease is diagnosed.

Most organizations dealing with brain health agree that the person involved should be told the diagnosis in a manner that is clear to ensure understanding. The only exception is if the person has already expressed wishes not to be told.

If the person is in later stages, a cognitively intact caregiver should be told so that safety precautions and appropriate care of the person newly diagnosed with dementia can be initiated.

Disclosure of a diagnosis of Alzheimer’s disease and other dementias is actually a goal of Healthy People 2020 because being informed is so important.

Another finding in this report was the disclosure was often based on independence versus disability. If the person diagnosed had a disability, they were more likely to have a disclosure of their diagnosis by the doctor. The more impairments in activities of daily living, the greater the percentage of disclosure to the person was made.

This is in contrast to the thinking that the more severe stage of dementia and the potential for loss of memory of the disclosure is the reason doctors don’t disclose or that patients fail to recall the disclosure. The findings show that the more impaired a person, the more likely they will get a full disclosure.

Non-Disclosure Consequences

With a truth telling approach, the thinking is that there is more harm than good that comes when the diagnosis is not fully disclosed.

In the past the fear of losing hope was one reason to withhold a diagnosis but now we realize we are capable of coping.

  • If someone is not told their diagnosis, they would be unable to seek other medical opinions.
  • A person with dementia would not be unable to make necessary plans for their future, including end of life decisions, while still capable of relating them.
  • At times it could be difficult for a physician to properly assess the ability of someone with later stage dementia to understand their diagnosis because for some people with dementia their ability to understand a diagnosis could change as their cognition can change rapidly from hour to hour and day to day.
  • Sometimes it is the caregiver who doesn’t want their loved one to be told about their diagnosis, even if they would themselves want to know if the tables were turned and they were diagnosed. This could lead to a lack of trust between the healthcare team and the family members.
  • It has been found that many patients and their caregivers do not recall the details of a diagnosis, which only underscores the need for clarity in information disclosure and repetition by the healthcare team so that appropriate follow-up care and decision making can be done by the person with dementia and their caregivers.
  • Some people and their caregivers deny the disease diagnosis and use their denial as a coping mechanism which could interfere with getting treatment and strategies initiated or making plans for the future while the person with dementia is still competent to do so.

Reasons for Non-Disclosure of a Dementia Diagnosis

There is no way to accurately pinpoint the number of people who are not told due to memory issues or lack of understanding the information provided to them. However, it is clear too many are not getting the diagnosis they should by the healthcare team.

Reasons why some healthcare providers don’t disclose the diagnosis:

  1. Some report the uncertainty whether patients are truly suffering from dementia or some other cause for their symptoms. Determining the diagnosis can be complex for some doctors.
  2. If a person is sent to a specialist to diagnosis their symptoms, communication back to the primary provider could lead to a lack of disclosure.
  3. Some doctors report a lack of time to not just fully disclose the diagnosis but to describe the disease progression and treatment plan and, as a result, they don’t even initiate the discussion.
  4. Doctors sometimes feel that there are insufficient support resources to offer after a diagnosis, including geriatric care providers and community resources. This is thought to keep them from giving information, since they don’t feel they have much to offer in dealing with the information.
  5. Some doctors feel ill trained to disclose the diagnosis and are unsure if they are providing information in a way that is clear, so have called for more education and training.
  6. It has also been reported that health care providers fear the reaction of the person being told they have dementia.
  7. Sometimes the patients themselves wish not to be told or the caregivers wish the patient not be told. The doctor has to navigate what he or she feels is the best course and will hold the wishes of the person first.
  8. 25% of doctors state that the lack of treatment was a reason they chose not to disclose a diagnosis.
  9. The stigma of the diagnosis especially in certain cultures holds some back from disclosure. Some healthcare providers try to shield their patient from stigma by not telling them they have dementia.

Benefits from Knowing Diagnosis

Despite the fact that many are not getting full disclosure from their healthcare providers or are choosing not to get the information, there are real benefits to knowing as early as possible that you have dementia.

You and your senior loved one can seek treatment, clinical trials, information, strategies for coping with the disease, complete legal documents, make financial plans and make the most of the time together when capable of making lasting memories for the family.

Knowing the diagnosis allows family caregivers to provide care in a way that will make life as pleasant as possible for their senior loved ones.

One person with dementia said:

“People can overprotect you,

which robs you of your independence much quicker.”

5 Technology Solutions Offering Seniors a Promise of Better Living

Our senior loved ones are beginning to use technology more and more — and seeing benefits from doing so.

It has taken awhile for some of them to begin to see the advantages to using some of the latest technology but they are getting there, often with the help and urging of family caregivers.

According to the latest statistics from the Pew Research Center, six in ten seniors currently go online. That is 59% online, of which 47% have high speed broadband connections in their homes.

Pew found that many seniors don’t use technology because of physical challenges that keep them from adopting, such as vision impairment or disabilities. They also feel that being disconnected doesn’t mean they are missing anything. Most seniors fear learning how to use the latest devices and feel they will need help to get comfortable and helpers to keep them using it.

The good news is that of those seniors who have connected, using technology has become a standard part of their life. They report using technology on a daily basis.

79% of those users feel that anyone who is not connected is at a real disadvantage because of the information they are missing. 94% of daily users feel that the internet is much easier to use and find the information that they seek than in the past.

Once seniors become technology fans, they are hooked for life. How do we get more of them connected with the latest technology to gain the benefits?

Technology for Seniors

There are more and more devices and apps available that will provide meaningful data and assistance in addition to answering their needs for accessible medical information and freedom from boredom.

Here are our top 5 picks to get started with technology:

1. Smartphones

New devices keep coming to market, each bringing advantages to our senior loved ones (and family caregivers).

The latest iPhone, 6 Plus with a larger screen, is getting attention from older adults who are ready to upgrade to these innovations. The screen measures 5.5 inches compared to 4.7 inches and that small difference actually makes a huge difference for seniors.

Many people find the larger screen easier to manipulate with fingers that are either larger or when mobility problems make dexterity hard such as arthritis. At the same time, the devices are lighter and easier to handle than tablets.

Seniors report they are easier to read than other smartphones were in the past. Most really enjoy seeing their photos on the larger screen too. When they increase the size of the font to read a book on their iPhone, they get more bang with the larger screen without having to cut off half the page.

Many state they are happy that iPhone came out with the larger screen since they already own an iPhone and did not want to learn a new device from a different manufacturer or platform just to take advantage of the benefits the larger screen has to offer.

A recent survey by Accenture reports that more than half of smartphone buyers will purchase one with a larger screen this year.

Smartphones with the ability to store information, point you in the right direction, alert you when trouble is happening or if the front door is breached and keep your senior entertained when they are bored or lonely can be invaluable helpers too.

2. Tablets

Tablets are great for older adults. They are easy to see for those with impaired vision, the fonts can be adjusted, they have touchscreens which are simple to use and lightweight compared to a laptop.

Tablets are starting to replace eReaders because they provide more benefits than just reading a book. Because they can be connected to the internet, they can replace laptop computers. In addition, your senior can use a tablet for email, Facebook, YouTube and Skype calling. They can still get all the books they can read, adjust the font size and download books quickly on a tablet so they won’t lose the benefit of an eReader but gain those provided by the tablet.

Many seniors are connecting, not just with social media on their tablet but also games. Participating in brain fitness games are fun and engaging to keep older adults mentally stimulated.

Seniors can also use programs such as Evernote that cross all platforms to keep their medical records, advance directives, medication lists and contact information handy. They can set up spreadsheets for a variety of functions including blood pressure readings and financial information.

They can connect with iTunes, Spotify, iHeart Radio or Pandora and listen to music wherever they are. You can both set up playlists or stations that have their favorite music and even create playlists with specific needs like getting calm or dancing.

One of the best features of a tablet is its portability. Music, photos — even streaming their favorite TV programs or movies — can be done on their tablet.

Most apps they can use on their iPhone can be downloaded on their iPad. There are of course many manufacturers of tablets that could be useful for seniors including the latest android version RealPad.

One great app is the Weather Channel. They can get up to the minute weather information for their location and every family member near or far too. They will get weather alerts when threatening weather is on its way too.

3. Joint Replacement, Transplants and Getting Active

Surgeons are happily using the latest technology to replace joints with computer assisted “space age” materials. They are replacing shoulders, knees, hips, elbows, and wrists. Once thought to last about fifteen years, the newer joints have a thirty year lifespan. The surgery itself allows for tissue sparing unlike previously as the operation is less invasive and usually doesn’t cut muscle. Recovery time is shortened due to surgical advances during replacement.

New joints allow seniors to stay active and live their lives fully without pain or limited mobility. Fewer limitations are placed on those with new joints. Playing sports and staying active are encouraged, not frowned upon, these days.

Cataract surgery advances make the surgery faster, only fifteen to thirty minutes with a speedy recovery. Stitches are rarely needed when an oscillating ultrasonic probe is placed in the incision to break up the cloudy lens and clean the eye for the new implant. Some incisions are made with lasers too.

The more we learn about prevention and the importance of staying healthy for the long haul, the more we all know that being physically active is vital. Getting exercise, going to the gym, and eating healthfully has become important for all of us as we age and should be for seniors for the highest quality of life possible. Many gyms are senior friendly, tailoring their machines and classes for lower impact, strength training and wheelchair accessibility so that older adults can participate without fear of injury. When we have joints that work, there is no excuse for not being physically active to benefit the body and the mind!

4. Health Apps

There are many apps that can be downloaded onto a smartphone or tablet (or both) that can help our senior loved ones connect their healthcare team with you as caregiver.

There are medication reminders so prescriptions will be taken on time and not forgotten. There are blood pressure monitors that can plug into the smartphone or dock it and transmit the information right to the doctor or family member so quick action can be taken if needed.

There are symptom checker apps that allow you to get advice if a problem occurs, guide you in medical emergencies and decide when it is time to call the doctor.

Apps can also track their medical information and health data, organize their appointment schedules, connect with caregivers and hold their advance directives. You can also set up remote monitoring using apps that can establish patterns and alert caregivers when the pattern is broken in addition to sensing danger.

There are assistive helpers available in app forms for reading when the light is low or magnify when the print is too small. There are phone finders to alert you if you lose your phone or tablet. There are also GPS apps and maps to help orient themselves if they lose their way.

5. Hearing Aids

Can you hear me now? Unfortunately many seniors have to answer no.

We expect to see an increase in hearing loss as we age due to environmental factors such as loud noise over our lifetimes from working or listening to music especially using ear buds. To meet this demand the hearing aid industry has exploded in the last several years with more manufacturers making more different types of digital hearing aids.

Happily, the technology improvements in hearing aids are finally coming. Hearing aids are being made so that noise levels, including bothersome and often confusing background noise, can be dampened. The newer technology has reduced the microphone feedback that was often annoying and also cut out the higher intensity sounds wearers found unacceptable. This is all done with a computer chip in the aid that determines whether the sound is noise or speech.

Getting started with new technology will need guidance from you about which products will be most beneficial for your senior loved one. But they will also need your help to show them how to use it, setting it up and creating secure connections to keep them from being victims.

They will wonder what they did before they got connected!

National Donor Day: Sharing the Gift of Life Through Organ Donation

We treasure the gift of life but the concept of donating our organs at the end of life makes many of us — and our senior loved ones — uneasy.

Many lives depend on that gift.

Did you know that there are more than 124,000 people in the U.S. in need of an organ, tissue or eye donation who are on a waiting list for a life saving donation?

Or that every 10 minutes another person is added to the national waiting list for organ donation?

Or even that 18 people each day die while waiting for a transplant that never arrives, with thousands dying before an organ becomes available?

Each day, an average of 79 people DO receive organ transplants. 

Did you realize that people of any age can be organ donors? There is no age limit on becoming an organ donor. Each person who donates can save as many as 8 lives.

Already, 100 million of the 320 million US citizens have registered. Is your senior loved one part of that number? Are you?

National Organ Donor Day

Clearly there is a need in the US for more heroes who sign up to be an organ donor, choosing to help others beat death.

Valentine’s Day is designated as Organ Donor Day to encourage us give a gift from the heart. It is also known as Donor Day and includes those who donate blood, platelets and bone marrow to those in need.

It recognizes those who have donated and encourages us to donate too!

Becoming an organ donor is a personal decision and one that takes some careful thought and learning to make.

It is the ultimate gift a person can give.

It’s also a decision that may be tough for family caregivers to shoulder if your senior’s wishes aren’t clear so encourage yours for make their donor election formal. Maybe you can do the same along side them.

Discuss Donation in Advance

As we and our senior loved ones age, facing our future and our choices for the end of our life are often difficult to do. It is even harder to talk about out loud with family members but it is a conversation worth having.

Not only will we learn what the wishes of our senior loved ones are but how their life can mean something crucial to the lives of others they don’t even know.

In the event that this is a conversation that didn’t take place before the end of life, many family members don’t feel they can opt to donate their senior loved one’s organs when asked to consent. It may not just be that you are afraid that your senior would not be in agreement, but the conversation never occurred resulting in what could be a missed opportunity to share the gift of life.

If your senior is one that has had led a nurturing and giving life, this may be a wish he or she would want to continue in a lifelong spirit of giving.

Knowing the Facts & Figures Can Help

Not knowing all the facts about organ donation can also hold back family members from making this decision when the end is near for our aging seniors.

In the event of an end of life experience, the timing may not be right to make this type of decision when there are many other priorities and emotions that take precedence at this time leaving valuable, life saving organs unused. Therefore, a conversation now is the best idea if you feel that they would want to share this precious gift or to simply learn about options.

Families who already know the wishes of their seniors are seven times more likely to pursue organ donation.

Even if your senior has designated on their driver’s license that they wished to donate their organs, the next of kin will still be asked to give consent for harvesting of organs when the time comes. You will need to know their wishes to make the choice yourself and feel confident that this is their wish. You will only know this through conversation now.

Organ Donation Facts

According to Donate Life, “90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.” You can turn a time of loss into a time of hope for others. Here’s a video that might help answer some questions you and your loved one have about organ donation.

There is more information and a link for you to become an organ donor if you wish at organdonor.gov. Organ donation is regulated and operated by the national registry UNOS, a private non-profit organization contracted by the federal government with strict controls in place.

  • Anyone at any age can donate organs. Despite having a chronic disease, the medical team will make a determination if there are viable organs or tissue that can be given or if the medical diagnosis does not allow donation.
  • Most organs are donated after death but many come from living donors.
  • Sometimes an organ can be used successfully even when the blood or tissue type don’t match.
  • You can save up to eight lives with your organs. Last year, organ donors made about 29,000 transplants possible. In 2013, more than 47,000 cornea transplants were done.
  • You can designate yourself an organ donor by registering with your state organ donor registry, every state has a registry. You can access your state’s registry here. You can also sign up when you renew your driver’s license.
  • Most major religions consider organ donation a final gift of love.
  • There is no cost to the organ donor or the family for donating an organ.

Talk to your senior loved one today and discuss their thoughts and wishes about organ donation. Get the facts and you’ll be ready when the time comes.

Donate Life and Share the Gift of Life!

Do Not Resuscitate (DNR) – Do We Avoid Acting Because Term is Scary?

Most of us tend to put off things we don’t really want to do, even if we know they really need to be done.

Procrastination is human, but in this case risky.

We need to encourage our senior loved ones to execute their healthcare decisions, known as advance directives or DNR, and then make them known to important people in their lives.

Then we need to do the same for ourselves.

We should have those decisions written in a legal way and shared with those closest to us, including our healthcare team. This is something upon which we all agree, no matter what decisions you make or how long you have put it off already.

The number of people who have formally stated their wishes and made them known is rising, not just in the United States but also across the globe — but there are still too many of us who have not done so.

Did you know that only about one third of the general population has completed advance directives, even though these forms are free, straightforward, and easily available?

Advance directives empower individuals to manage the final chapter of life in a dignified manner and according to their own values. If advance directives are not completed, if there has been no conversation to express end of life wishes amongst the family, the result is often medical intervention that can be painful and without dignity when ‘doing everything’ is the only course.

Even if proper advance directives have been executed, if those closest to you aren’t aware of them, they could potentially not be followed as you would like.

What are Advance Directives?

A Do-Not-Resuscitate (DNR) order means that you or your senior loved one opts not to receive cardiopulmonary resuscitation in the event that the heart stops beating. DNR orders cover failure of the heart to beat, in which case CPR or chest compressions are typically performed in an effort to assist the heart beat and force the blood to be once again pumped to vital organs.

Many agree that CPR needs to be withheld if the person involved wishes it to be held. In addition, if the medical team agrees that CPR will be ineffective or has limited potential to benefit the person, life saving measures that could cause further harm should not be performed.

Put another way, will CPR benefit a person if their quality of life is so poor that meaningful survival is doubtful even once the heart resumes beating? This is a decision your loved one, doctor and family should discuss, especially if no written advance directives are in place.

Having a DNR order does not mean that you will not be treated for your medical issues nor that you have given up all desire to live, but that you feel that performing CPR won’t give you a desirable outcome, a good quality of life.

It is important to differentiate between a DNR order and a living will. The rules governing advance directives vary from state to state. It is prudent for you to check with a professional or agency in your state to be sure that the documents your senior has are valid in their state.

Dangers of CPR for Elders

Seniors nearing their end of life or even in the midst of a medical crisis are fragile. As often occurs, broken and cracked ribs are a result of CPR.  Frail, brittle bones crack with each chest compression.

If CPR is “successful” in that it revives our elder, he or she can endure pain and confusion that may last for the rest of his or her life. Oftentimes their life is prolonged for merely hours, days or weeks.

The statistics are grim:

  • about 15% of healthy people who have CPR in a hospital will survive;
  • 1-2% of elderly people will live past CPR performed in the hospital and go home;
  • many of those who do go home after hospitalization have significant lasting medical effects such as brain damage; and,
  • The statistics are worse for CPR performed outside a hospital.

This is not to say CPR is bad or everyone should have a DNR order in place, just that it is reasonable to consider if one wants CPR performed.

Whether or not one wants lifesaving procedures performed is, after all, a personal decision. There are many factors that might go into personal considerations.

Why Should We Make Our Wishes Known?

Besides the potential for further pain and suffering when our senior loved ones might not reap great rewards with desired quality of life, many prefer to die with the same dignity they lived their lives. They choose to allow the natural course of their life and failing bodies to unfold without the lifesaving measures that could keep them alive without dignity or quality of life not to mention further disability.

Most seniors have a view in their mind of their own end of life. They may have expressed it verbally to members of the family and may already have had lawyers prepare the documents.

Some older adults are fearful of talking openly about the subject to those they love because they don’t want to cause them pain. There may be fear that speaking about it will cause untoward events to occur.

If they don’t bring it up, you should. Ease into this discussion but handle it in such a way that shows your love and concern for them.

In the case of natural aging, we can often see our senior loved ones declining and know that they may not have many years ahead. This is a good time to be sure there are documents completed and a discussion is had by all. Unfortunately, in the case of a crisis such as an automobile accident, a fall with head trauma, a stroke or another medical emergency it may be too late or impossible to make wishes known.

We never know when the need could occur, so we should be ready now.

This is not just for your senior loved one but you as family caregiver as well. Planning for how and who will take over your caregiving duties is vital for your senior’s well-being in the event of an emergency involving you.

Would Another Term Be Less Scary?

Many across the healthcare field, especially those who deal closely with end of life issues, have started to use the term “Allow a Natural Death” (AND) instead of DNR. They feel that this term is more agreeable and clear in its intentions. We all want our loved ones and ourselves to have a peaceful and natural death.

In Texas, for example, they are using the term AND to open family discussions of end of life care with better understanding and outcomes.

Discussing resuscitation in terms of the damage it can cause if performed does not paint a very comfortable end for many. The opposite of having a natural death is having CPR performed.

Because this is a deeply personal decision for your senior loved one and even you, careful consideration with all the necessary information to make an informed decision should be taken.

No matter what decision about end of life care is made, it is recommended that you keep a copy of all advance directives, especially a DNR, POLST or Comfort Care DNR form attached to the refrigerator so that everyone can have access during a crisis especially first responders. Your senior’s doctor should have a copy and members of the family.

Don’t keep anyone in the dark, it could lead to disagreement when the time comes it is needed and ultimately lead to the wishes not being followed.

As we plan for our end of life, let’s make each day a reason to celebrate. Here is an important reminder for us all!

Top Five Regrets of the Dying

  1. I wish that I had let myself be happier.
  2. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
  3. I wish I hadn’t worked so hard.
  4. I wish I’d had the courage to express my feelings.
  5. I wish I had stayed in touch with my friends.

Source: Guardian News Report

Prepare Now to be Ready When Emergencies Hit Senior Loved Ones

Many family caregivers unfortunately know the names and faces of the people in the emergency room of the local hospital pretty well. Maybe too well.

Why might this be? Because they are visiting the emergency rooms (ER or ED) and hospital wings with their senior loved ones much more frequently than they want.

According to the Centers for Disease Control and Prevention (CDC), in 2009–2010, “a total of 19.6 million emergency department (ED) visits in the United States were made by persons aged 65 and over. The visit rate for this age group was 511 per 1,000 persons” and “29% of ED visits by persons aged 65 and over were related to injury, and the percentage was higher among those aged 85”.

Emergency care due to falls is on the rise too.

Since we spend so much time sitting in healthcare facilities and going at a moment’s notice, we need to be ready when it happens and have the things we need all together for easy pickup.

Emergency ‘Go’ Bags

You may have seen on some popular TV shows law enforcement agents keeping “go bags” at the ready so they can travel on short notice. The same concept applies here.

Putting as many supplies in a bag that will be your go bag when an emergency arises makes great sense and you will be happy you did it, especially if your senior loved one is a frequent flyer to the hospital.

Many experts have contributed ideas to this go bag, to which we have added our own ideas and what we have found useful in the past with our own loved ones. Here is a list of the essentials you may need.

  1. Important documents! Keep copies of medication lists that include allergies, medication generic names and dosages as well as times when they usually take them. Phone/email contacts for health providers and family members so you can contact everybody you need. Include advance directive copies, such as a living will or DNR orders your senior has executed. Your senior’s Medicaid and other insurance cards. Many of these forms can be downloaded and kept in your smartphones using a variety of apps or programs such as Evernote.
  2. Smartphone or tablet plus chargers to keep them running for as long as you might need.
  3. Toiletries such as toothbrush/paste, makeup, deodorant, wet wipes, and tissues as well as any other personal care item you need.
  4. Keep snacks such as granola bars or nuts in case you can’t leave the bedside to get to a vending machine or you can’t find healthy things you want to eat there.
  5. Coins and single dollar bills to feed a parking meter or vending machine.
  6. Sweater or light jacket for you and them plus some pajamas and warm socks for them.
  7. I had some teabags for me and my loved one since neither of us drink coffee. I could get hot water but sometimes not a tea bag.
  8. Small pillow or neck rest.
  9. Notepad and pencil to jot down directions or keep a list of questions for health care team.
  10. Medical history list for your loved one, including surgery or procedures performed and any immunizations received.
  11. Book or e-reader that will help you pass the time. Crossword puzzle book or other items that make the time go by. “Entertainment” for you to pass the time and keep your mind from imagining the worst. Don’t forget a headset or headphones so you can listen without disturbing others.
  12. If you need medications for the duration, be ready to grab those too. Care for yourself as you care for them.
  13. Memento of meaning to your senior loved one that might help calm them, such as stuffed animal or picture of loved one.

Hospitalization Tips for Comfort & Peace

There are also some great tips for when your senior loved ones end up in the hospital for an unplanned trip or a scheduled procedure, no matter how long they may be staying.

  • Never let your car be very low on fuel or blocked in driveway – you may need it to move fast on a moment’s notice.
  • If your senior loved one goes to the emergency room without you, be sure to go by their home or send someone else there to get items they may need during their stay, such as their eyeglasses, dentures or personal items, including a robe and one change of clothes for their return home. I can’t tell you how many seniors go by ambulance to the hospital in the middle of the night without dentures or glasses and have a hard time during their hospital stay eating or reading consent papers. A bathrobe will be handy in the hospital for allowing them to maintain some dignity if they are asked to walk in the hallways or getting to and from the bathroom.
  • Brings some favorite foods from home, even if you have to call on others to cook them, to help spur your senior loved one’s appetite.
  • Don’t let your senior see your emotions. If you are scared, they will be too. Keep your emotions and fears in check while you provide them with uplifting messages of concern.
  • Answer their questions honestly about their diagnosis, treatment options and prognosis and be sure they are involved in the decisions that are made. Really listen to what their choices are for care and follow their lead.
  • Support the people caring for your senior loved one. Tell them thank you for their service, their jobs are not always easy.

You will never be fully prepared for emergencies especially when it is your loved one and emotions come into play. But having some essential items ready and waiting for you for when they are needed, will make it just a bit easier to help senior loved ones and you be face the challenges.

We would love to hear what items you would put in your Go bag so we can add it to our list!