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Is Alzheimer’s Disease a growing problem?

Is Alzheimer’s Disease a growing problem these days or has it always been around but called a different name, or not as frequently diagnosed?

The term Alzheimer’s Disease was first used in 1910 after Dr. Alois Alzheimer discovered shrinkage and abnormal deposits in the brain upon doing an autopsy of a woman who had profound memory loss. In the late 1960’s assessment tools were developed  to measure mental and functional decline in the brains of older adults. Advances in technology allowed scientists to study brain cells in detail and observe during an autopsy that there were similar changes in the brain among those with memory loss.

In 1974 the National Institute on Aging established federal funding for Alzheimer’s research. The Alzheimer’s Association was founded in 1980 to advance research, support those affected by the disease and promote brain health. Efforts by the National Institute on Aging and Alzheimer’s Association have increased our awareness of the disease as a nation.

Back in the 60’s & 70’s scientific research and discoveries were not publicized in popular media. When an elderly person seemed confused, we called them senile. Remember the term “hardening of the arteries?” Families would try to keep it hush-hush and help their spouse or parent in the privacy of their own home. In the rare case a diagnosis was made, there were no medications or treatments available.

Fast forward to the current decade and you will notice people are much more forthcoming about illnesses, age-related or otherwise. The generation of Baby Boomers, who tend to be vocal about their wants and needs, and demand solutions to their problems, are now dealing with aging parents.

The rise in the number of Americans diagnosed with Alzheimer’s Disease cannot be simply attributed to better diagnostic tools and the willingness of people to speak openly about their challenges. While the medical community cannot definitively answer the question either, examining risk factors can give us a clue.

The first risk factor is age. The older you get, the greater the risk of developing Alzheimer’s. In 1900, 4% of the U.S. population was over the age of 65. In 2012, that percentage increased to 13.7%. As the population grows, so do the number of Alzheimer’s cases.

Family history of Alzheimer’s is another risk factor, and the risk increases if more than one family member has been diagnosed. There is a genetic component to the higher risk, but researchers are also looking into environmental factors family members share. According to the Alzheimer’s Association, risk genes increase the likelihood of getting the disease, but do not guarantee it will happen. Risk genes have been found to be a factor in 20% – 25% of the cases. Deterministic genes, which are found to directly cause the disease, are a factor in less than 5% of the cases.

Other risk factors include diet and exercise, low mental stimulation, and social isolation. It is no secret that Americans could improve their nutrition, increase physical activity, and limit watching TV and other passive brain activities.

It makes sense to propose that as the risk factors of old age, genetics and poor lifestyle choices are present in a greater population in America, so does the growing incidence of Alzheimer’s.

 

 

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Caregiver burnout

Care giving for a spouse suffering from Alzheimer’s disease or another form of dementia raises the mortality of the spouse providing the care.

This is a very complex time in life. We often see a family caregiver who has lost weight, is sleep deprived and a has compromised immune system. It is ironic that the family caregiver’s health fails while their loved one is in relatively good health other than the effects of dementia.

Resentment can also set in on the caregiver. Irritability, hopelessness and helplessness also take over. Some are filled with anger, sadness, and a sense of failure. Depression is a risk as a result of these stressors, emotions and illnesses. It becomes clearer why caregiver mortality rises.

Studies show that mortality rises when a spouse is providing care for dementia.  Most studies show about a 63% increase in mortality for the caregiver in this type of situation.  Unfortunately it does not stop there.  A study done by The New England Journal of Medicine in 2006  shows that a wife’s risk of death is 61% greater during the first 30 day following the death of her husband.  While not as great, the husband’s risk is 53% following the 30 days after his wife passes.

Imagine planning for your golden years throughout your adult life. Perhaps you envisioned traveling the world on cruise ships, or seeing the USA in a RV, or even a simpler life puttering around in the garden, doing things you never had time for earlier. These visions fade because of a horrible disease.

Providing care for your spouse with dementia makes it difficult to sleep, shop, cook, and do most other activities that were routine and once taken for granted.  Socializing becomes a thing of the past. The caregiver stops going to church, family functions, and social events as a result of having to stay home to make sure their spouse is safe.  Isolation and burn-out can be self imposed because of the belief that no one can do it as well as a family member.

Furthermore, the family caregiver feels a loss of  identity as mom, dad, friend, confidant, grandma or grandpa when every ounce of energy is directed at caregiving.

There are devastating consequences to personally providing 24 hour care 7 days per week without getting outside help.

If you can identify with the above, take it upon yourself to get help. Many communities have caregiver support groups where you can find out how others cope successfully. Senior centers may offer day care and there are agencies where you can hire caregivers to give you a break by coming in for a few hours on a regular schedule. Assisted living facilities often have respite programs for overnight stays.

 

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Masking Memory Loss

As children grow up and leave the nest, they often spread out to different cities and even states. Career opportunities, a desire to live in a different environment, or the location of spouse’s family are just some of the reasons for moving away from their home town. Sometimes, they just need a little breathing room from their siblings or an overbearing parent. Family relations don’t ease with distance but may possibly soften over time. That is until, family members are confronted with a difficult situation.

Let’s say for example Joe, the oldest son, moved to the East Coast shortly after graduating from college. He made a point to visit twice a year, until the demands of his own family and job prevented him from making regular trips back to California. The youngest daughter Julia became a nurse and remained close to her parents in their home town. She and Joe had opposite temperaments and often did not get along. Julia is a natural caregiver and realizes how much she needs to compensate for her mom’s lapses in memory and ability to complete complex tasks. This has been taking its toll on her energy and is affecting her relationship with her own husband and kids. When Joe comes to visit, Mom is on her best behavior.  He doesn’t understand why Julia is so concerned about their mom’s decline. He resists any notion that mom has slipped.  Julia accuses him of being in denial. She becomes angry with Joe because he doesn’t see the sacrifices Julia is making for their mom.

Often times, those who are closest to the person experiencing memory loss are more likely to accurately assess the situation. Family members who are more remote, either physically and/or emotionally don’t seem to accept that there is a problem.

Those in the earlier stages of memory loss often practice a phenomenon I like to call “performing.” They realize they are expected to respond in a certain way while in a familiar situation. In the example above, Mom seems perfectly fine because she is performing. Conversations seem to flow easily because she is in complete agreement with Joe’s comments. She may not be able to articulate that it is hot outside, so she replies “Isn’t that the case.” when Joe remarks on the summertime. She will cover up the fact that she shoes are on the wrong feet because they are so comfortable that she didn’t even notice. She will ask Joe to set the table because he is so good at it, rather than reveal she can’t remember which side to place the fork.

The best way to get a remote sibling to see the real behavior of their parent is to identify the times when, in Joe’s case, mom is performing. He could make a statement that is clearly nonsensical and listen to mom agree. By gently challenging mom to do something spontaneously,  Joe could observe that lost look in her eyes, and perhaps frozen body language. When mom doesn’t know that he is watching, she is likely to reveal herself the way Julia sees her.

When family members can work together to accurately assess memory loss in a parent, they are in the best position to seek the appropriate level of care. Denying or delaying medical treatment for the parent and support for the caregiver is an injustice to the entire family.

 

 

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Reversing Roles between Parent and Child

Age related illnesses often cause parents to depend on their children for care. Roles become reversed. This is a confusing time to shift orientation from the self sufficient parent who guided and supported their children, to a parent who is dependent and needy.

Adults are faced with uncertainty on how to relate to their aging parents. Feelings of guilt, regret, and incompetence accompany the role reversal. No matter how much the adult is compelled by love, decency and gratitude for their parents, it feels strange to  become the caregiver.

Adults of aging parents are often in the stage of their life that is incredibly demanding. They are working long hours and caring for their own offspring. How do they add another time consuming role of caregiving for their own parents? The response we frequently hear is “You do what you have to do.” They squeeze in the time to try to do it all.

There are only 24 hours in a day, so something has to give when dividing time between work, spouse, parents and children. Activities which support well being such as hobbies, fitness activities and socializing are let go. Despite cutting back on time for themselves, there is still not enough time in the day. Adults doubt their effectiveness on the job, in their marriage, at caregiving and parenting.

We offer these tips to those who feel overwhelmed when caring for their parents while managing all of the other responsibilities of their current roles:

  • Acknowledge your feelings, then move on. You may have regrets that you didn’t do enough for your parents, spouse and children. If you realize that no one can please everybody all the time, you might just give yourself a well-deserved break.
  •  Slow down and take a breath. Breathing will calm you down and improve your ability to think with a clear head.
  •  Let go of the notion that no one can do it as well as you. Let others help when offered. Ask for help when needed. Allow your children to help their grandparents within their abilities.
  •  Explore opportunities for respite. There are home health agencies which offer respite services on an hourly basis, and many assisted living communities will provide care for several days/weeks. If there is no money to pay for respite, ask another family member or trusted friend to give you a break.
  •  Realize that you are not alone. Confide in your friends and clergy about your doubts and fears.

Caring for others without short-changing yourself can be tremendously rewarding. It is the greatest honor to help those whom you love.

 
 

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Breaking the News

Breaking the news to a parent that it is time to move from their home into an assisted living facility is one of the most difficult tasks according to most of the families we meet. While some individuals welcome the benefits of living into a senior community, many fear their loss of independence and are not ready to face their inability to care for themselves. We have seen many approaches, and just as individual personalities and situations vary, so do the successful ways in breaking the news.

It is helpful to bring up the idea on several occasions. Mom or Dad will likely resist at the first mention of assisted living, but may warm up to the thought over time. We recommend that you do some research before bringing up the subject. Pre-screen a few communities you think would fit Mom or Dad’s needs. Then, talk to them about their preferences for living arrangements and explore options together. Most communities have web sites where you can take a “virtual tour.” Check out the community’s reputation with their licensing agency, the local Ombudsman’s office and the Alzheimer’s Association. Once you have selected a few, make an appointment for a tour and bring your parent with you. By encouraging their participation, they will become more invested in the idea. Once your parent learns about their living arrangements, activities and comforts of care, they may look forward to moving.

Decorate their new room or apartment before the move. Many communities will encourage bringing bedding, furniture, pictures, and memorabilia. Familiar belongings will trigger feelings of comfort and security. Do not bring valuables or items that you won’t mind getting misplaced or damaged.

Perhaps your parent is very stubborn and absolutely refuses to talk about the idea of moving into assisted living. The idea may become more acceptable if it is based on the recommendation of a trusted doctor. Further, constantly reassure your parent that you and other family members will remain involved in their life, and follow through on that promise.

We definitely do not recommend dropping off them for “lunch,” moving their belongings into their bedroom while they are dining and making a quick get-away. We have witnessed this approach and it always results in a great deal of emotional trauma. Residents of assisted living facilities do not give up their personal rights, and cannot be prevented from leaving if they absolutely refuse to stay there.

Respite care is an option to temporarily try assisted living. Just as a daunting task can be more manageable by breaking it down into smaller steps, respite care allows an individual to stay for a few days, or up to a month, to see if it is the right environment. In our experience, many residents want to stay longer, once they get settled in.

In other cases, the individual’s impaired mental capacity prevents them from being actively involved in the decision making. Many of the same recommendations apply for those with dementia, plus:

  • Carefully research communities and select one which has a dementia program.
  • Speak with the staff about your parent’s background and any special needs.
  • Make the move during their best time of day when they are calmest.
  • Stay positive – your attitude is infectious. Do not communicate any feelings of guilt or anxiety.
  • Provide constant reassurance that Mom or Dad is in a safe place.

 

 

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Finding Balance in Caregiving

Caregivers understand that they face demanding, yet rewarding circumstances when caring for a family member. For adult children, it can be a way of giving back to a parent. For a spouse, it may be the expression of a love that never ends. In addition to knowing that they are fulfilling the needs and preferences of their family member, caregivers often express the feeling that they live a more purposeful life and are at peace with themselves.

The most successful caregivers are blessed with strength, endurance, compassion, patience and unselfishness. Not everyone is naturally endowed with these virtues, so we suggest making an honest assessment about your caregiving attributes and be realistic about the needs of your family member. Caregivers who understand their strengths and shortcomings can learn to find a balance between their role as a caregiver and their personal needs.

Caregivers need to embrace the notion that successfully caring for another also requires caring for themselves.

Rarely, can a single person fulfill all of the responsibilities needed by one who is suffering from a disease or disability. It usually takes a team of health care professionals, family members, care providers and support services. Caregivers can better manage such a demanding job by using the resources of others. Studies show that taking periodic breaks from the caregiving role (known as respite,) participating in support groups and/or counseling help caregivers remain successful, with less stress and greater satisfaction.

This may seem obvious, but in reality caregivers are more likely to get wrapped up in the role of caregiving to the extent they neglect their own health. According to the Family Caregiver Alliance, depression, coronary heart disease, hypertension, poor immune function, slower wound healing and increased risk of mortality are faced my many caregivers, especially women.

If you are a caregiver, how can you find balance, take care of yourself while providing the care that your family member needs? While the answer is simple, it may not be so simple to do. It is the act of letting go and acknowledging that others can help you from time to time with caregiving.

Options range from creating an informal support network of relatives, friends and neighbors to using organizations devoted to helping caregivers. Although you may not have received offers from relatives, friends and neighbors to help with caregiving, it doesn’t mean they are unwilling to lend a hand. They simply may not know how to offer or what to do. You may be surprised at their quickness to agree to help with a specific task.

Remember to take care of yourself, it’s the first step in taking care of the one you love.

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