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Dementia, I Will Give You My Memory, If You Leave Me My Personality

What Does Dementia Mean to the Average Person?

Dementia is a general decline in cognitive ability severe enough to interfere with daily life. Memory loss is one example. Dementia is not a specific disease. Dementia is a term that describes a wide range of symptoms associated with a decline in memory and other thinking skills severe enough to reduce a person’s ability to perform everyday activities. People with dementia often have problems with short-term memory recall, keeping track of a wallet or other possessions, paying bills, planning and preparing meals, remembering appointments or traveling out of the neighborhood. Dementia is progressive, as symptoms start out slowly and gradually get worse. As Dementia progresses, individuals notice increased memory loss, mental decline, confusion especially in the evening hours, disorientation, inability to speak or understand language, making things up, mental confusion, or inability to recognize common things.

What Does Dementia Mean to Those of Us Who See it Every Day?5724-asorc-microsite-tile

Although the above examples of dementia symptoms are true, and do indeed interfere with a person’s everyday life, they are not a full picture of dementia symptoms. When dementia steals memory, language, thinking and reasoning, these new deficits are referred to as “cognitive deficits” of the disease. The term “behavioral and psychiatric symptoms” describes a large group of additional, and in my opinion most devastating, symptoms that occur to at least some degree in many individuals with dementia. In early stages of dementia, many experience personality changes such as irritability, apathy, anxiety or depression. In later stages, many experience sleep disturbances, mixing up their days and nights, agitation such as physical or verbal outbursts, combativeness, combativeness while getting care, refusal to get care, general emotional distress, restlessness, continuous pacing, shredding paper or tissues, yelling for no apparent reasons, delusions, paranoia, misperceptions, or hallucinations.

Real Life Example of a Behavioral Change.

Linda is 87 in the moderate stage of dementia. She retired as a Vice President of a company. Her family told me that she was known for her business acumen and immaculate appearance. Her outfits were always perfectly put together, her makeup and hair flawless. Today, due to the dementia, it is a struggle to get Linda to take a shower, comb her hair, or get any grooming what so ever. She refuses to wear makeup and will very rarely agree to get her hair done. She refuses manicures and pedicures that she used to get weekly for over 40 years.  It is extremely painful for her family to watch Linda, who was always so well put together, now refuse to get her hair done, and be combative when any grooming is attempted.  Unfortunately, this type of a personality change is common to those with dementia.  Dementia has stripped Linda of her desire to look nice and be well groomed. In a year’s time, dementia has changed grooming habits Linda had for over 40 years.

Real Life Example #2

Lynn is 84 in the moderate stage of dementia. She worked as party planner before she retired. She was always very social and the life of the party. Lynn remained social into the mild stages of dementia. During the tail end of the mild stage, Lynn was still social, however when she would be around others they would ask her questions about her family and herself that she had trouble answering due to her dementia. Each time Lynn was not able to answer a question, she would leave the social or the event immediately. Shortly after, Lynn refused to participate in any of the hobbies and socials she enjoyed her whole life. This is another common example of dementia changing a person’s personality, and converting a social butterfly into a reclusive butterfly.

Silver Lining of Example #2.F778569F-5132-4C60-B010-4667A225A893

Lynn was reclusive and isolated for several months. Finally, her family decided to move her to the Orchard at Tucker, a community that specializes in cognitive care and engagement for those with cognitive deficits. Lynn’s family provided the Orchard with a detailed profile as well as her history and the Orchard engagement team came up with a detailed plan to combat Lynn’s new reclusive personality. The engagement team took all the information they were given, and they were able to create an Enabling Environment for Lynn. To learn more about enabling an environment see http://stage-osl.daveminotti.com/creating-an-enabling-environment-is-key-to-providing-dementia-care/)

With the creation of a new enabling environment, Lynn slowly started to participate in some activities. Although the Orchard engagement team did several things to modify her environment, one such modification was surrounding Lynn with other residents that were on her cognitive level. They also made sure that all team members were aware of Lynn’s history and her strong desire to mask her dementia.  When everyone was aware of Lynn’s dementia, and the other resident around her also had dementia, no one asked Lynn any difficult questions, and her dementia never stood out to others. This one environmental change alone led to Lynn participating in activities daily, although never to the extent she used to participate prior to the dementia. Environmental modifications are very helpful, but they can never make up for all the damage caused by dementia. In Lynn’s case, her personality change could have been minimized if an enabling environment was created sooner. I believe Lynn’s personality change was so significant, so quickly, at least in part due to Lynn losing her self-esteem by not being able to answer the questions asked, and her struggle to hide her dementia from those that were noticing. This is a prime example of a personality change that dementia caused, that could have been lessened by an earlier intervention.

The Take Away..

I have spoken with so many loved ones of those with dementia, and they have all agreed, that the behavioral changes caused by Dementia that are hardest on their loved one, as well as the entire family. Losing your memory is nothing compared to becoming a different person.  Also, it is the behavioral changes caused by dementia that impact one’s life, much more negatively than memory loss. It is much easier to compensate for a person’s memory loss than to compensate for extreme anxiety, paranoia, combativeness, or refusal to get care. These behavior symptoms are rarely talked about. When you ask the average person what dementia means, they will say dementia causes memory loss. Most people do not realize how many other terribly negative symptoms are caused by dementia. They don’t realize that if dementia just caused memory loss, most people with dementia would have a much better quality of life. Most people don’t understand the devastation dementia causes. Dementia causes comprehensive memory loss, not just memory loss of what happened yesterday, or what time it is, but in many cases the loss of one’s personality. Very rarely are the personality changes positive. Almost always these behavioral personality changes negatively impact a person’s quality of life.  These changes often create a completely different person, often unrecognizable to friends and family. As dementia progresses, these changes happen quickly and become more and more noticeable.  It is important to understand that they are still the same person inside. They have not changed on the inside, the way they now communicate with the outside world has changed. Dementia causes a person to have a battle, both internal and external, a battle for who they were, and how they were ones perceived.

Nutrition Therapy at Each Level of Dementia Care

mousse-desserts-square.dlWhat is a common challenge for those with Dementia?

Challenges at mealtime are extremely common for those with dementia. These mealtime challenges will change as dementia progresses. There are distinct and separate challenges that are associated with early, middle and late stage dementia.

What are the common mealtime challenges for those in the Early Stage of Dementia?

  • Forgetfulness
  • Loss of concentration
  • Changes in food preferences
  • Reporting that foods taste bland (foods previously enjoyed)
  • No longer enjoying favorite restaurants
  • Unable to hold attention through a meal
  • Distracted by the environment at mealtime

What are the common mealtime challenges for those in the Moderate Stage of Dementia?

  • Confusion and unawareness of surroundings, place and time
  • Appetite increase and weight gain
  • Decreased appetite and weight loss
  • Failure to understand proper use of utensils
  • Refusal to sit during meal times- pacing, wandering
  • Increased difficulty with word finding and decision making
  • Unable to recognize food temperatures
  • Unable to see food as food (may think food is poisoned)
  • Unable to recognize food items once liked
  • Hiding of food

What are the common mealtime challenges for those in the Severe Stage of Dementia?

  • Preference for liquids over solids, due to appetite change or lack of swallowing ability
  • Aggressive or combative behaviors during a mealSmoothies
  • Clenches jaw, or closed fist when attempting to feed or be fed
  • Refusal to eat due to unknown reasons (variety reasons could be at play)
  • Inability to self feed, not being used to being fed
  • Swallowing impairments ranging from mild to severe
  • Weight loss despite regular caloric intake (can also be due to increase activity due to increased anxiety)

What are some important tips for a creating a dining environment for those with Dementia?

  • Tableware contrast ( avoid white plates on white linens)
  • Too many utensils
  • Avoid high gloss floors
  • Natural light is best
  • Avoid a distracting dining environment with too many items on the table
  • Make sure the table and chair is sturdy, and of the right height
  • Simplified dining room is best
  • All food served at once is usually best (although there are some exceptions)
  • Offer finger foods (avoid finger food that are too intricate or rare)

What if the above tips do not work?

If the above tips do not help with the challenges presented at mealtime, your team needs to take further steps to make sure that nutritional needs are met and your resident with Dementia is getting adequate caloric intake and the necessary nutrition.

The first thing your team needs to do is to do a full assessment of each person’s unique situation and determine the specific deficiencies caused by the mealtime challenges.  During the assessment your team must set goals and prioritize the deficiencies, identify resources needed based on the severity of a person’s challenges. Your team needs to also identify possible behavioral and nutrition interventions such as a change of dining environment. Finally your team should specify the time and frequency of the intervention.

What’s Next?

Please check back soon for Part II of this article

 

Comprehensive Dementia Care Includes Educating Family Caregivers

What is Dementia?

Dementia is the loss of many or all cognitive abilities, such as thinking, remembering, and reasoning, as well as behavioral abilities to such an extent that it interferes with a person’s daily life and activities. Dementia ranges in severity from the mildest stage, when it is just beginning to affect a person’s functioning, to the most severe stage, when the person must depend completely on others for basic activities of living.

What happens to many caregivers of loved one’s with Dementia?

Caring for a loved one with dementia can be challenging and, at times, overwhelming. Frustration is a normal and valid emotional response to many of the difficulties of being a caregiver. While some irritation may be part of everyday life as a caregiver, many caregivers feel feelings of extreme frustration.  Frustration and stress negatively impact their physical health and may cause a caregiver to be physically or verbally aggressive towards their loved one.

What are the Warning Signs of caregiver frustration?

  • Shortness of breath or knot in the throat
  • Stomach cramps or chest pains
  • Headache which could be severe
  • Compulsive eating or excessive alcohol consumption
  • Increased smoking or drug use
  • Lack of patience or the desire to strike out
  • Sleepless Nights

Why is dementia education important for families caring for loved ones with dementia?

Dementia is called a family disease, because the chronic stress of watching a loved one slowly decline affects everyone. Education helps caregivers understand their loved one’s challenging behaviors and how to respond to them correctly. Often starting out caregivers use intuition to help decide how to respond to a challenging behavior. Unfortunately, dealing with Dementia is counter intuitive, and often the right thing to do is exactly opposite of what seems like the right thing to do.  Caregiver education also helps families understand the progression of their loved ones disease. They will learn what to expect and therefore have an opportunity to prepare for these changes. Changes in their loved one’s cognitive abilities wont be a shock every timeskydd they happen, because a caregiver will be prepared for them to happen. Caregivers will also learn which skills are typically retained the longest and can tailor their interactions with their loved ones’ based on these abilities.

How can communities help educate dementia care givers?

There are a wide variety of ways to educate and support family caregivers. Some of these ways are:
  • community workshops and educational forums
  • lecture series followed by discussion
  • support groups
  • skill-building groups, case studies
  • individual counseling and training
  • family counseling
  • technology-based training that can be done at home

The Takeaway…

At Orchard Senior Living, we find all of the above methods useful. Each of these methods should be utilized by a community whose priorities are to provide comprehensive dementia care to their residents and their family caregivers. Currently we offer our 3 Step Navigating the Transition Program to individual and families. We also offer our monthly 2 hour Live and Learn Series which combines skill building, lecture, discussion, as well as an educational forum. Both of these programs are presented by a dementia specialist, specializing in family counseling and dementiaARP-Caregiving-Summit_80327224-750x485 training. We also offer a support group facilitated by a Clinical Social Worker. We are currently in the final stages of bringing a web based training program to our residents’ family members to help them on a daily basis. We believe comprehensive dementia care is more than the traditional model of a secure memory care, care partners helping with ADLs, and an Activity Calendar. Comprehensive Dementia Care is taking care of a resident and their families from the time prior to a move in, as well as throughout their entire journey. To find out about the Comprehensive Care Programming at the Orchard call us at 404-775-0488 for a private counseling appointment to determine how we can help. If we can’t help you in your unique situation, will will provide you with the information for those who can.

The Key to a Smooth Transition into a Dementia Care Setting

Does anyone actually like to move?

Moving to a different location can be traumatic for anybody especially any older adult. It
becomes even more difficult if the person moving has some type of cognitive impairment or dementia.Usually a
person with dementia is unable to problem solve and accurately judge when
it is time to move. Deciding to move, planning the move, giving the
person with dementia choice and control, and what to do after the move,
frequently concern staff and family.

When is the time to make the move?

In order to make a transition as smooth as possible, the best time to move is while a person is in good health. Every attempt should be made to move the person with dementia while they are healthy. Because Dementia is a progressive disease, it will only get worse as more time lapses. People with dementia who are forced to move out will likely not to do as well following the move as will people with dementia who move voluntarily. Although the decision may not be voluntary, a person with dementia with do better after a move, if the move was planned, and they had some input.

Common mistakes families make?

Many families wait too long to move a loved one with Dementia. During the mild stage of dementia a person is able to establish routines and learn to navigate their environment. Because we know that a person with dementia functions best in a familiar environment, it is key to move them while they still have the capacity to learn that environment. Once an environment becomes familiar, a community is able to provide the necessary cognitive care to compensate for a person’s decreased abilities therefore allowing them to sustain a level of independence and allow for a good quality of life for years to come.

The consequence….

When a family waits too long to move a person with dementia, their cognitive abilities have declined to the point that they are not able to learn a new environment. At this point the new environment will never become familiar. This results in a longer, and more difficult transition as well as a diminished level of independence for the duration of a person’s stay.

The right time…..7730d221ef4d4b91dffa4c2100dde11e--flowers-wallpaper-hd-wallpaper

Although this is different for every person, for many people with dementia, late mild dementia stage-early moderate dementia stage is the best time to move to a community that offers cognitive care for all levels of dementia starting with the Mild level all the way to Severe Dementia. During this level of dementia, most people are still able to establish a routine and familiarize themselves with an environment and thrive for years to come.