When Laurie Scherrer was diagnosed with early onset Alzheimer’s and frontotemporal dementia, she was told several things by doctors, including advice that she should get her affairs in order. She writes about the eleven things she wished the doctors had said, including the idea that she could reduce confusion and agitation by observing triggers.
This short article from Next Avenue (nextavenue.org) is about anosognosia, or the lack of awareness of one’s own dementia. This is not denial but being unaware. “This lack of awareness can cause major stress and heartache for caregivers.”
Here’s a short excerpt:
Both of Kathy Kling’s parents, who are divorced, have Alzheimer’s. Kling recently talked with her mother, Karen Kelly, about her father’s disease. “Oh, I hope I never get it,” her mother replied. She was diagnosed six years ago.
The full article is here:
When Your Parent Doesn’t Know He Has Dementia
It’s a common aspect of the disorder, but tough on caregivers
By Emily Gurnon, Health & Caregiving Editor
March 28, 2018
Apathy is a common symptom in frontotemporal degeneration (including frontotemporal dementia, progressive supranuclear palsy, corticobasal degeneration, etc) as well as other disorders such as Parkinson’s disease and Lewy body dementia. In my experience working with caregivers of these neurological diseases for nearly 15 years, I can say that apathy is one of the most challenging symptoms for caregivers and families.
The Association for Frontotemporal Degeneration (AFTD, theaftd.org) has just published its winter issue of “Partners in FTD Care.” The newsletter, for healthcare professionals, presents an overview of the three components of apathy — initiation, planning, and motivation. A case study is shared of Linda and her caregiver husband Kevin. There is a discussion about what distinguishes apathy from depression.
Additionally, there are lots of strategies provided to manage apathy. And two views of apathy are shared — one from a person diagnosed with frontotemporal dementia and another from an FTD caregiver.
I’ve copied a few excerpts below but the entire newsletter is worth checking out, if you are coping with apathy.
Partners in FTD Care
Association for Frontotemporal Degeneration
Components of Apathy
Three distinct components of goal-directed behavior are initiation, planning, and motivation. Each is supported by a distinct region of the frontal lobe. Apathy may emerge where there is dysfunction of any one of these components; understanding
them may help care providers and families to develop interventions tailored to an individual’s particular needs.
What distinguished her apathy from depression?
Linda’s family doctor ascribed her loss of interest in activities and relationships to depression, despite Linda doing well on the Mini-Mental Status Examination and not presenting as sad or concerned about the changes in her life. Antidepressants did not change her symptoms. She struggled throughout a psychiatrist’s evaluation of her planning, working memory, verbal fluency, and mental flexibility. Her history and executive-function impairment prompted the psychiatrist to order an MRI to investigate further. Prominent atrophy in Linda’s frontal lobe indicated the apathy
was due to degenerative disease rather than depression, and the doctor diagnosed FTD.
How did Linda’s husband cope with her growing lack of motivation and activity?
Kevin found himself frequently overwhelmed and angry that he had to plan and arrange all of Linda’s activities. He found himself thinking that she was sometimes being purposeful and defiant, even though he understood that her changing behavior was a result of FTD. He attended a caregiver support group led by an AFTD-affiliated facilitator where he could talk with others facing similar challenges. Group members suggested structuring her daily activities, and encouraged him to simplify the steps. When his children started to offer advice, Kevin struggled with guilt; he wondered whether he was doing enough for Linda. His doctor suggested he see a psychologist to help cope with his emotions and the stress of caregiving. This helped him continue to manage Linda’s care while acknowledging his own need for support and assistance.
Apathy is among the most challenging symptoms for family and professional caregivers to manage. Effective interventions are individually tailored, rely on environmental strategies, and are delivered with understanding and patience.
Support Positive Approaches
• Reframe apathy as brain-based rather than the result of stubbornness or defiance.
• Develop individualized activities based on needs and interests that motivate and direct the person: spiritual, emotional, physical, nutritional, intellectual, and social. Follow the schedule consistently and adapt the level of difficulty of activities
as abilities change.
• Check your emotions continually and try to maintain a positive tone. People with FTD may have difficulty understanding speech but understand tone of voice and non-verbal communication. Anger and annoyance impede engagement and task
• Practice patience.
• Plan extra time for activities.
• Remember, you cannot change the person with FTD. Concentrate on modifying the environment and the intervention.
• Provide emotional support for family caregivers struggling to engage a loved one. Many feel anger over apathetic behavior, or feel they “aren’t doing enough” for the person with FTD, which adds to caregiver stress.
In CBS Sunday Morning story from today, Dr. Bruce Miller from UCSF describes his work with some dementia patients. He has compared brain scans of dementia patients with those of a child savant:
“We are seeing the same pattern of loss of function on the left side of the brain, [with] increased function in the right posterior parts of the brain, the parts that allow us to take something visual in our mind and put it on a canvas.”
In some dementia patients — so called “acquired savants” — “the disease that destroys some brain areas activates others, unlocking hidden talent.”
Watch the full TV story here:
The story features one patient with frontotemporal dementia.
The NIH (National Institutes of Health) hosted a two-day summit in October 2017 on research that is needed to improve quality of care of persons with dementia and their caregivers. The summit was streamed live. The summit was of most interest to those involved in research. Only a few useful ideas were shared, including the DICE approach, which we’ve heard about previously. It is an approach to responding to difficult behaviors.
Describe – the who, what, when and where of situations where problem behaviors occur (the physical and social contexts)
Investigate – current dementia symptoms, medications, sleep habits, etc. that may be contributing to difficult behavior.
Create – a plan to prevent and respond to difficult behaviors by changing environment and educating the caregiver.
Evaluate – how well the plan is being followed and how it is working. Make necessary adjustments that work for the family.
Recently, Laurie White, a social worker in the North Bay, sent me a copy of her excellent guide for family caregivers on “Coping with Behavior Change in Dementia” (dementiacarebooks.com). (The book is to be shared within our local support group.) Basically, this is a handbook to implementing the DICE approach. Laurie and co-author Beth Spencer begin by saying that the family caregiver must become a “detective” to understand the cause of these behaviors. They address coping with the 4As – anxiety, agitation, anger, and aggression – among other problems. One guide book gives lots more helpful ideas to dementia caregiving than an entire two-day NIH conference!
CareGiving.com runs a “Caregiving Podcast Network” on Blog Talk Radio. Every week, they host a 30-minute “FTD Chat” about various aspects of frontotemporal degeneration. (Both PSP and CBD are FTD disorders.) In a chat over the summer, guest speaker Geri Hall, PhD, ARNP, talked about motivating someone with FTD to do things and be less apathetic. As lack of motivation and apathy are issues in all of the disorders in our group, I thought the notes from this podcast were worth sharing with everyone. In addition, the focus of this podcast is helping someone with a neurological disorder do more for themselves, with coaching from the caregiver.
Denise Brown, founder of CareGiving.com, is host of the podcast. The expert speaker, Dr. Geri Hall, works at Banner Alzheimer’s Institute with families coping with all types of neurological disorders.
Brain Support Network volunteer Denise Dagan recently listened to the podcast. Denise has shared some overall insights. Note the two suggestions offered by Dr. Hall —
1- get the help of an occupational therapist
2- have your care receiver attend a day care program
In terms of overall insights, Denise Dagan says:
This 30-minute podcast is a very good talk about helping someone with a neurodegenerative disorder, who is having trouble accomplishing tasks, to be able to do more for themselves with coaching from their caregiver(s). Dr. Hall explains that people with neurodegenerative disorders do have goals. When their executive function process breaks down it prevents them from accomplishing those goals – or even starting them. This is especially true for those with dementia or advanced Parkinson’s disease. Dr. Hall emphasizes that people with executive function issues are not being lazy, willful, or manipulative. She gives specific suggestions for helping them to stay focused to complete each step of a task on the way to their goal. People with [neurological disorders] can suffer from apathy and/or depression, making some projects seem overwhelming. Breaking projects into separate tasks, even over several days, makes them more manageable and less exhausting.
If you have difficulty breaking down a task into its composite steps for your family member, Dr. Hall recommends having your neurologist write you a referral to an occupational therapist (OT) for “Functional assessment and task simplification techniques.” The OT will evaluate your care receiver to establish his/her skill level and teach you, the caregiver, how to break a task into an appropriate number of steps.
Both Dr. Hall and Denise Brown recommend having your care receiver attend an adult day program and pay attention to how they give instruction to the program attendees in a step-by-step fashion. Getting your care receiver used to this method of instruction both at home and at the day program brings continuity to their days. Having a routine both at a day program and home helps them anticipate what comes next.
Denise Dagan’s full notes from the podcast are below.
Notes by Denise Dagan, Brain Support Network Volunteer
Talking FTD with Geri: Motivating Person with FTD
Caregiving Podcast Network on Blog Talk Radio
August 24, 2017
Denise Brown is the host of this podcast. She has been having her own struggle motivating her husband. She recently put together that her husband is quite capable of participating in activities if she takes the time to instruct him step-by-step.
Denise’s expert guest, Geri Hall, PhD, begins by explaining how executive functioning is required to accomplish a task.
You must be able to:
– Set a goal
– Make a plan to accomplish the goal, and
– Be able to carry out the plan.
A person with executive function difficulties knows what they want to do.
– The more they think about it or concentrate on what’s involved in accomplishing the task, the less they are able to organize their thoughts and accomplish the task.
– They are not being willful or lazy or manipulative. Some days executive function may be better than others. Fatigue makes executive function much worse.
– Depending on the neurodegenerative disorder, they may or may not realize they have difficulty figuring out the proper order in which to do things.
A person with executive function difficulties may:
– Refuse to participate because they cannot immediately think how to get started. Don’t ask, “Do you want to…?” The answer will always be, “No.”
– Wander away in the middle – not because they lost interest or forgot what they were doing, but because they cannot think what to do next to accomplish the goal/task. Sometimes, if you touch their arm to distract them from their mental muddle, and give them the next step to continue toward their goal, they can complete the task at hand.
– Getting the steps mixed up or backward. Putting underwear on outside their outerwear, etc.
– Have difficulty maintaining attention or concentration.
To improve executive function and motivate participation in activities:
– Have a consistent schedule day-to-day. Even so, don’t expect them to be able to know what comes next.
– Use non-verbal prompting. They may not process complex sentences well. Aphasia = not being able to get the words out, but can also include not being able to process what’s being said to them.
— Listening to you splits their concentration from what they are trying to do (like shower), so hand them the soap, rather than tell them to pick it up.
— Trying to follow your instructions makes them think about the task. The more they think about it, the less they are able to finish the task.
– Have bright colored toothbrush, comb, cup, plate, etc. so your care recipient will gravitate toward them – and use them. [My mom liked purple! If it was purple, she would pick it… clothing, cake, toothbrush, comb, etc.]
– Post written instructions (on a white board). This may work early in the disease.
– Task simplification = break activities into steps your family member can follow. Take a bath may become: take off your clothes, use the toilet, turn on the water, get in the shower, etc. Or, you may have to break it down further: take off your shirt, take off your pants, take off your underwear… Have your neurologist write you a referral to an occupational therapist for “functional assessment and task simplification techniques” This teaches the caregiver how to break goals into the number of steps your care receiver needs.
– Get rid of distractions, like the TV. They cannot split their attention.
– Keep activities short in duration. Next time you ask them to participate, notice how long it is before they begin to lose eye contact and drift away from the activity. Keep future activities to just short of that time limit.
– The goal is to get the task done – not necessarily entirely independently.
It definitely can be frustrating. It is easier to just let them watch TV, but the reward is worth the effort because it gets your family member involved with life again. They only watch TV so much because nobody is helping them accomplish things by breaking down the task into each individual step.
Denise Brown was able to have her husband help bake blackberry cobbler by giving him one task at a time until he lost interest. Later she built raised beds for him to garden in because he used to love gardening. She goes out with him and gives him each task to accomplish planting, watering, etc. Then, they made eggplant parmesan together when he brought an eggplant in from his raised garden beds, and were able to enjoy the food together. See if you find joy in your loved one’s face when they are able to do something themselves, even with some assistance. It will warm your heart as a caregiver.
Dr. Geri Hall says to recognize as caregivers you have a lot on your plate and need to develop one way you reward yourself at the end of the day (wine, hot bath, etc. that you find relaxing) as a reward for a job well done in the overwhelming effort you make to engage your loved one in life.
Start with things that are over learned, bathing, eating, hobbies. Your care receiver will be able to participate easier doing these activities with help than doing something that’s totally new. Remember, if it doesn’t work, so what? Try something a bit different tomorrow.
Denise says having your family member go to an adult day program a few times a week helps them to be able to follow these step-by-step instructions at home because that is how the day programs get participation from the program attendees. If you can learn how instruction is presented to your care receiver most effectively, you will be more successful at giving instructions at home. Day programs also follow a routine every day, which helps your care receiver anticipate what comes next.
When your family member is at the day program, you have time for yourself. You should take the opportunity to relax and engage with others outside of caregiving conversation, rather than running errands or doing chores.
You will experience resistance from your care receiver to attending a day program, but if you are persistent and allow them some weeks to acclimate to the new place, people and routine, you may find they really enjoy it, eventually.
This post may be of interest to those dealing with the non-Alzheimer’s dementias in our network — Lewy body dementia, progressive supranuclear palsy, and corticobasal degeneration. (PSP and CBD do not always present with dementia.) Lewy body dementia is specifically mentioned in this interview.
Being Patient (beingpatient.com) is an Alzheimer’s news website. In July 2017, the news organization interviewed Dr. Marwan Sabbagh of the Barrow Neurological Institute in Phoenix, AZ. In the interview, Dr. Sabbagh describes the challenge in making a dementia diagnosis. He describes some improvements that could be made in the standard practice of diagnosing dementia.
Dr. Sabbagh says: “Pathologically pure Alzheimer’s without any other pathology is quite rare. It’s only like 33 to 40 percent. Most Alzheimer’s is mixed with something else – hippocampal sclerosis, vascular change, argyrophilic grain [disease], or Lewy body. Pure disease of any type is quite uncommon. A lot of people have overlap but they look typically like Alzheimer’s dementia, so the clinical presentation and the pathological presentation don’t always align as much as you would think they would. … As a clinician, I ask ‘What’s the clinical syndrome and how do we go about teasing it out to make sure we have the correct diagnosis?’ … People are grossly misdiagnosed. Lewy body is not detected often. Most of the other dementias are completely missed.”
The video interview is just under 12 minutes. Excerpts from the interview are copied below. (The “transcript” doesn’t include all of the interview.)
Is It Alzheimer’s or Another Type of Dementia? How the Experts Make a Diagnosis
Interview with Marwan Sabbagh, MD
Being Patient (beingpatient.com)
July 26, 2017
Although the National Institute of Health has published medical reports on guidelines to diagnose Alzheimer’s disease, it can sometimes take years for patients to get an accurate diagnosis from their primary care doctors. Expensive scans or lumbar puncture tests are one way to confirm the presence of beta amyloid plaques or tau tangles in the brain, but those aren’t an option for many patients due to their high cost. Being Patient asked Marwan Sabbagh, a leading researcher on the diagnosis of Alzheimer’s disease at the Barrow Neurological Institute about the best way to determine if a patient is suffering from mild cognitive impairment or dementia.
Being Patient: There’s a lot of confusion over how you get diagnosed for Alzheimer’s disease. Previously, we’ve been told that a PET (positron emission tomography) scan or a spinal tap are the only conclusive ways to figure out whether there are plaques and tangles in your brain. Why is there so much confusion over diagnosing dementia?
Marwan Sabbagh: The historical, medical practice in the United States has been to take a diagnosis of exclusion. You have a medical history, a neurological exam, cognitive impairment, historically, and then you get a MRI to exclude brain tumors, masses, hydrocephalus, or stroke. You get a thyroid [exam] to exclude thyroid problems, and you get a B12 level [test] to exclude deficiencies in B12. The problem has been a diagnosis of exclusion is a grossly inaccurate approach and the diagnostic accuracy, at best, is 75 percent.
Being Patient: What are some of the essential questions you need to ask and what are some of the essential things that primary care doctors should be looking at in order to determine whether or not this is Alzheimer’s dementia?
Marwan Sabbagh: I think doctors know how to do a mini-mental state exam – a MOCA, Montreal Cognitive Assessment. They know what to do but they don’t know what questions to ask on the front end, so I’ve been proposing a restructuring of the initial side of the consultation. There are structured interviews that are available now – the AD8, the AQ and the IQ code. These are caregiver informant-based interviews. Do they have this?Do they have that? Are they doing this? [These questions] inform the provider to say, “It’s time to look further.”
The second thing I propose is that we need to look at aggregate risk analysis. There are now ways to say that the probability of Alzheimer dementia is very high if you are age 85, have a family history, female gender, hypertension and diabetes. You can come up with a score that says the probability of Alzheimer dementia is very high.
Being Patient: I want to talk a little bit now about different types of dementia and diagnosis – a number of patients say they were misdiagnosed and a pathologist we spoke to said that, through autopsy, he found that the majority of cases in his practice are being misdiagnosed. How do you tell if it is Alzheimer’s or another type of dementia?
Marwan Sabbagh: Pathologically pure Alzheimer’s without any other pathology is quite rare. It’s only like 33 to 40 percent. Most Alzheimer’s is mixed with something else – hippocampal sclerosis, vascular change, argyrophilic grain (disease) or Lewy body. Pure disease of any type is quite uncommon. A lot of people have overlap but they look typically like Alzheimer’s dementia, so the clinical presentation and the pathological presentation don’t always align as much as you would think they would.
As a clinician, I ask “What’s the clinical syndrome and how do we go about teasing it out to make sure we have the correct diagnosis?” You are absolutely right. People are grossly misdiagnosed. Lewy body is not detected often. Most of the other dementias are completely missed.
Being Patient: Does it matter to the patient in the end in terms of how they’re dealing, and coping, and engaging in maybe lifestyle treatments or medication?
Marwan Sabbagh: It does. It matters a lot. The reason it matters is lifestyle modifications, which are probably very good for brain wellness and prevention strategies in the Alzheimer’s spectrum from pre-symptomatic to the full dementia probably do not have as much data to support the recommendations in other dementias. Flatly, I don’t think there’s any shred of evidence that lifestyle recommendations would help another dementia like Lewy Body or frontotemporal dementia.
Being Patient: Is there a difference in diagnosing early onset versus dementia as Alzheimer’s in an elderly patient?
Marwan Sabbagh: In the way I approach it, yes. Most commonly, if it were a young person, early onset, I would do a spinal tap as my CSF (cerebrospinal fluid) confirmation to confirm the diagnosis. I tend to be a little bit more aggressive and invasive in what I do to diagnose my patients. Older patients, I might get a PET scan and, if it’s approved, I might get neuropsychological testing. I might get an ApoE genotype.
Being Patient: So many people now are impacted by this disease, a lot who are the children of a parent or a grandparent, and they want to know what are the early signs that they should look out for?
Marwan Sabbagh: You never misplaced things, now you’re misplacing things from time to time. You’re telling something repeatedly and you never did that before. These are the kinds of very subtle, very beginning things that would say [it’s] time to get an evaluation. Especially if there’s a risk.
Being Patient: There are people who carry ApoE4, who have both one variant and are homozygous, and there are people who don’t, who end up getting Alzheimer’s. How much should that genetic profile enter into diagnosis?
Marwan Sabbagh: That’s controversial and I’m sure you’ve had different opinions from different doctors so I’m going to give you my perspective. I tend to be on the more progressive side of the discussion. In the clinical evaluation of my patients with mild cognitive impairment (MCI) due to Alzheimer’s or dementia due to Alzheimer’s, I frequently order an ApoE genotype. If they’re an ApoE4 carrier in the setting of MCI or dementia due to Alzheimer’s then the probability of Alzheimer’s pathology in the mix is very high.
I never order it for people who are asymptomatic, even if they have a family history. I agree with many in the field that it’s not inherently a diagnostic, it is simply a risk factor, but it’s a very rich risk factor because, if you are an ApoE4 carrier, the probability of having Alzheimer’s amyloid on your PET scan is very high. Some people are even proposing the idea of using it as a screening tool. Has this become common practice? The answer is absolutely no.
Being Patient: Once you give someone a diagnosis of Alzheimer’s dementia, do you believe the earlier you catch it the better off you are?
Marwan Sabbagh: I come from the school of thought that Alzheimer’s is a treatable disease. I am aggressive in treating my patients. I am proactive in addressing their healthcare needs, their family needs, their medication needs, their legal needs, and offering clinical trials as an added value to our clinical practice. Patients want that information. They’re seeking it. They’ve craving it. They want it from a credible source.
This is a long article in a recent LA Times about whether it’s important to distinguish between Alzheimer’s and other forms of dementia. Understandably, the focus is still on Alzheimer’s Disease.
Here are some excerpts:
* “Alzheimer’s disease is the most feared and most common form of dementia, accounting for between 60% and 80% of all dementia cases diagnosed. But at least seven other forms of dementia, and dementia linked to the movement disorder Parkinson’s disease, can cause loss of memory, reasoning, judgment and the ability to speak, comprehend and care for oneself.”
* “Doctors and insurers, including the federal government, which administers Medicare, are asking some variants of the same questions: If an effective test, which costs between $3,000 and $5,000 a shot, can diagnose dementia early, and distinguish Alzheimer’s from other forms of dementia, should it be recommended to patients with cognitive concerns and routinely covered by their insurance? Would it make patients’ lives better, or lower the cost of their care?”
* “At the Alzheimer’s Assn. International Conference in London last week, researchers reported their preliminary findings from a trial that is testing the impact of diagnostic testing for Alzheimer’s disease on nearly 19,000 Medicare beneficiaries … with a diagnosis of either ‘mild cognitive impairment’ or atypical dementia. The study … set out to find out whether knowing — getting the costly test that would offer either confirmation or reprieve — would change the way that patients with cognitive troubles are treated, or the way that they plan their lives. The preliminary results suggested it did. After getting the results of a PET brain scan to detect and measure amyloid deposits, which are the key hallmark of Alzheimer’s disease, roughly two-thirds of the subjects saw their medication regimens changed or were counseled differently by their doctors about what to expect. That new information may have guided family caregivers in planning their own futures, or prodded patients to make financial decisions and power-of-attorney assignments sooner. Some who learned that they did not have Alzheimer’s discontinued medications that can have unpleasant side effects. Others learned they do have Alzheimer’s and decided to enroll in clinical trials that will test new drugs.”
* “A second study presented in London analyzed data from several studies, and found that in a large population of research participants with cognitive concerns, brain amyloid PET scans led to a change in diagnosis in approximately 20% of cases.”
* “To the estimated 16 million Americans living with some form of cognitive impairment, telling the difference could make a significant difference. Dementia forms with different origins progress differently (or sometimes not at all). They respond best to different medications, and will come to require different levels of care and treatment. Some (though not Alzheimer’s) can even be reversed with treatment. Being able to distinguish which form of dementia a patient has should help doctors and caregivers to make better choices.”
Here’s a link to the full article:
Is it Alzheimer’s or another dementia form? Why doctors need to distinguish and how they might do so
by Melissa Healy
July 27, 2017
Someone in our local support group recently sent me this link to US Dept. of Health and Human Services’s curriculum for physicians (especially primary care physicians) and healthcare professionals (social workers, psychologists, pharmacists, emergency department staffs, dentists, etc.) on dementia. Though the web address includes the term “Alzheimer’s,” frontotemporal dementia is also mentioned in this curriculum:
Training Curriculum: Alzheimer’s Disease and Related Dementias
Health Resources and Services Administration (part of Dept of HHS)
One of the types of frontotemporal dementia is the “motor type,” which include corticobasal syndrome and progressive supranuclear palsy.
Here are some excerpts on frontotemporal dementia.
Overview of Mild Cognitive Impairment and Dementia for an Interprofessional Team (Module 1)
Frontotemporal Dementia Types
* There are at least 3 distinctive clinical syndromes, each with heterogeneous neuropathology.
– Progressive behavior/personality decline: behavioral variant FTD (bvFTD)
– Progressive language decline: Primary progressive aphasia (PPA)
– Progressive motor decline: corticobasal syndrome, amyotrophic lateral sclerosis, or [progressive] supranuclear palsy. FTD with progressive motor decline is rare. FTD with progressive motor decline can involve movement problems/slowed movement, muscle rigidity (Parkinsonian symptoms), body stiffness, and changes in behavior or language.
* Behavioral variant FTD (bvFTD) is the most common variant. It is characterized by marked personality changes and changes in social conduct.
Understanding Early-Stage Dementia for an Interprofessional Team (Module 5)
Early-Stage Frontotemporal Degeneration (FTD): Overview
* FTD is a heterogeneous group of diseases with overlapping clinical symptoms but different causative genes and differing underlying pathologies.
* FTD is caused by damage to frontal and/or temporal lobes. Impairments generally progress quickly but memory often remains intact.
* Persons with FTD demonstrate changes in behavior and personality, language problems, and motor problems.
( Memory impairment is minimal in early stages.
Palliative and End-of-Life Care for Persons Living with Dementia (Module 12)
When to Consider Hospice Care in Persons with End-Stage FTD
* Persons with end-stage FTD are generally younger and healthier than persons with other types of end-stage dementia.
* As with other dementias, FTD is often not recognized as a terminal diagnosis.
* End-stage FTD may “look different” than other advanced dementias.
This is a very helpful article about choosing a dementia care facility. The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65. Donna shares the mistakes she made in choosing the wrong care facility…twice.
Here are the ten lessons Donna learned:
1. Start investigating potential facilities NOW.
2. Learn how your loved one’s care will change as he/she declines.
3. Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4. Know what you can afford.
5. Assess if the facility is using innovative designs.
6. Ask if the resident can safely go outside.
7. Ask about safety.
8. Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9. Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10. Check service levels and quality when the facility least expects you.
These lessons are detailed in the article here:
How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016