Glen’s resources about caring for a person with dementia

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Dementia Carer-  Tips from a Mentor  Carer Fast Track® Series Books 1-11 Compiled

Preface   ISBN: 978-0-6488198-9-9  

This series of eleven booklets presents new perspectives on being a carer for a person with dementia.  These are practical tips and insights not published before.  Each 10-minute booklet is designed to fit within the limited time resources of busy carers.

REVIEWS:

“…some really cool bookletsShort, Sweet, Concrete”

Rita A. Jablonski, PhD, CRNP, FAAN, FGSA
Professor, School of Nursing

University of Alabama.


“These practical tips have been road-tested by many other carers… I commend them to you.”
Professor June Andrews RMN, RGN, FRCN, OBE


“your booklets are brilliant. Really informative, and you write so logically making everything easy to read.” Christine, UK.



Professor Rita Jablonski, University of Alabama has endorsed my booklets and has adopted “Yes We Have No Bananas” into her courseware: https://makedementiayourbitch.com/2…-dealing-with-dementia-rage-in-ftd/#more-2700

Professor June Andrews, University of Stirling, UK, has endorsed “Managing the Rage Stage” and “Tips For Communicating”: https://juneandrews.net/blog/post.php?s=2019-09-09-frontotemporal-dementia ” These practical tips have been road-tested by many other carers.”
https://juneandrews.net/blog/pos t.php?s=2019-09-09-frontotemporal-dementia

Karen Tyrell CDP, CPCA, Canada has licensed “Tips For Newbie Dementia Carers” for all students enrolled in her dementia courses.

Most helpful January 31, 2020 USA
“This is immensely useful to a person who takes care of a loved one with FTD. It gives solid suggestions for how to deal with rages. Most of these modalities I have never seen explained in other publications or on official websites. I wish I had known these things when we were just starting out after diagnosis. When my husband’s behavior did deteriorate into anger, rages and finally blows, I was happy to have this resource to help me.”

Excellent help! January 30, 2020 USA
“This book gives an excellent look at an aspect of FTD rarely discussed openly. This could truly be a life saver for the caregiver!”

Dementia Carer- Tips from a Mentor
The information you need to have is here April 23, 2020, USA
“Like most people with a spouse with dementia I have an entire bookshelf full of books on it, The 24 Hour Day, What if it’s Not Alzheimer’s, Stop and Smell the Garbage, Where’s Alice, etc etc. This little set I happened on is by far the most educational, informative and helpful of them all.
Instead of just telling you what you can expect or someone else’s story it gives you black and white steps on how to deal with it. What to do, or not do, what to say, or not say.
It is my #1 recommendation for anyone looking for help.”

This book compiles all of the most innovative practical measures for managing the most challenging behaviours encountered from a person with dementia.  Subjects encompass violence, aggression and accusations exhibited by persons in the Rage Stage as well as new techniques for communicating, including “Yes, We Have No Bananas”.  Caregiver wellbeing and survival is addressed.  Diagnosis, anticipated symptoms, genetic testing are covered from a carer perspective.

This series of eleven booklets presents new perspectives on being a carer for a person with dementia.  These are practical tips and insights not published before.  

This compilation, primarily for use in nursing courses, is a warehouse of discrete parts, each presenting novel perspectives on aspects of care.  This compilation does not present the continuous story of a journey with dementia as there are many such books.

That brings me finally to a confession and a disclaimer I must make.  This compilation looks deceptively like a book. But it is not, it is a collection of booklets.  To be brief, they are blunt. This compilation sits within a cover only because that is my only available option in print.

by Glen Davis (Author)

Table of Contents

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Libro 7 de la serie134
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 This book

Dementia Caregiver Survival:The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 1)

YOU are a carer or nurse for a person suspected of suffering dementia.  You are seeing the symptoms, the losses in cognition, the memory troubles, the behaviour quirks, the obsessions, the faded empathy.  You know this person is not truly ‘a jerk’.  But what other surprises lay in store for you?  How do you get through this?  Dementia will take one life.  Don’t let it take two.

The Carer Fast Track® Series of books is about you, the carer.  Along the trails I travelled for twenty years as a carer, I befriended over 200 people with dementia.  I learned their stories, met their families, understood their behaviours, attended many funerals and distilled the lessons. 

I want you to survive this. To do so, you must accept that you are at risk. Take seriously the early signs of fatigue, depression, and caregiver burnout and follow our formula.  Your health and your survival are at stake. This series of booklets is designed to cut the following risks and avoid having you become a victim:

Caregiving as a risk factor for mortality:The Caregiver Health Effects Study
Richard Schulz, PhD; Scott R. Beach, PhD, JAMA. 1999


After adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than non-caregiving controls.

If you are a spouse, relative or friend of a person with dementia, your relationship is personal, one-to-one and your focus is the welfare of that one person.  The role is intense and consuming.  While the person with dementia is living at home, you can be on-call, on duty 24*7.  The frequency of your caring duties increases as the disabilities increase of the person with dementia.

If you are a carer, social worker or nurse, your relationship is with a number of patients, one-to-many (or one-of-several-to-many).  During your working day, you care for the welfare of all patients in your charge.  This is your vocation or your career. It is demanding work for the whole duration of your shift, involving incidents and emergencies which intrude into routine caring duties.  The stresses of this work are very significant and must be countered with off-shift relief.

ABOUT Us 

I was principal carer of my wife Carole.  Our journey together with dementia started in 2000.  I retired from my work to care full time for Carole in 2010. In 2015, Carole was admitted to a nursing home as her care required three-shift expertise. I visited daily and befriended many other residents and families, learning their stories. Carole died in 2019, aged 79, from organ failure caused by her advanced dementia.

Along our journey, Carole survived over 50 ‘excursions’ from home in five weeks, three of them involving police. She suffered a fall, pulling on her pyjamas.  A fractured hip required a prosthetic joint and the anaesthetic caused delirium.  Her placement journey was traumatic for us both, but was ultimately successful.  Four months before she died, I successfully relocated Carole by Royal Flying Doctor for her safety and wellbeing.

My own health cracked after four years as full time carer.  I underwent surgery for prostate cancer, incurring lymphoedema as an outcome.  Then, I snapped an Achilles tendon when running at night to Carole’s aid. 

Some of our story is published here:

I help carers behind me on the FTD road, just as others help me.  The resources published here as the Carer Fast Track® Series are designed to present insights not previously well covered by published literature.  These practical tips have been road-tested by many other carers. There are millions of people in need of support and strategies. They include nursing home staff, nurses and professional carers as well as family caregivers, people exercising Power of Attorney and guardians.

Now in 2020, deep into the First Year after Carole’s death, my grief has turned a corner.  The New Year offers the time for renewal and I am accepting the offer.

But that’s enough about us.  These booklets are about you. 

Caregiver Survival:

What is different about caring for a person with dementia is that we lose the person and our relationship progressively with fading cognition, therefore our grieving starts during the caregiving journey.

By the time you get to suspect “dementia”, you have been living with your Loved Ones’s (LO’s) symptoms for years, probably a decade, and have suffered misunderstandings, relationship damage and you have reacted and maybe responded.  These relationship changes have hit you by surprise.  They occurred as you reacted to the failing empathy and changed behaviours of the person with dementia.  Your response may have been emotional detachment in self defence. But suddenly with diagnosis (dx) comes a new opportunity to see the bigger picture, to recognise that your past has dealt with neurological disease and to see where degeneration will take you.  Carers need more validation at this time and they typically don’t get it from doctors.  Doctors deal with patients, not carers.  Doctors typically think dementia starts with dx (I have had a doctor specialising in dementia patients say that to me in writing). That is the start of a doctor’s role and the first opportunity to participate in patient wellbeing.

Caring for a person with dementia is stressful.  The same may well be true of other fatal diseases, but it is very significant when your LO does not know who you are. And it is that stress which raises the carer mortality by 63%.  This says risks are real and severe and require conscious management and a superior strategy.  This statistic is probably greater than being a circus performer.  On par with going to war.  It’s as risky as playing in the NFL.

Can we improve our odds?  This is what NIH says about surviving grief:

https://mailchi.mp/nih.gov/taking-care-of-yourself-while-grieving?e=1087ccce67

In summary:

Which of those make a significant difference in survival?  How do we know which are the right strategies for us?  NIA and NIH offer no information.  I can tell you which of these made most difference for me, but I know from my discussions with many other carers that the answers are different for each individual.  You have your own unique combination of issues, not only from that NIA list.  Your LO has other medical conditions.  You may have your own unique disabilities.  There may be guns or drugs in the house.  The way to survive is to use this as a checklist to identify what is troubling you, and use your friends and mentors to make improvements.  You need your own unique custom survival strategy and it needs to be effective for you.  Your mission is to identify, plan and execute those “somethings” that you are going to do to avoid becoming a burnout statistic.

The solutions promoted by the Alzheimer’s Assoc. are respite or placement, but respite is often declined by the person with dementia or unacceptable on grounds of behaviours.  Even permanent residential placement is not an end of the caring and advocacy roles.


Way back in 2012, the assessor asked me “How do you cope?” I misunderstood the question and started to describe the things I did… “But… HOW do you cope?” I said “We lower our standards” and I think she immediately regretted asking. But it was true. Cleaning happened less often. Some objectives were abandoned.  We choose our battles. We lower our standards. We abandon some retirement plans. And we forgive ourselves some of our limitations. These are necessary adjustments for carer survival and the tolerance of the loads that otherwise result in carer burnout.


A big tip for carer survival is to have dreams of a future …it is healthy to dream about “life after dementia”. And later, to plan that. A good friend of mine, another caregiver to his wife resident in a nursing home, was very despondent about the impending death of his wife. I made him a scrapbook with pockets, inserted pics of him and his wife, his kids, his grandkids, his siblings and a few of his hobbies. I called it “My Life After Dementia” and encouraged him to fill in the blanks and show his family. He told me that these activities literally saved his life. And he drove eleven hours each way to visit me and tell me again.

I used to find a relief by starting to nourish ideas of “life after dementia”. When I put my head down, I would give a minute to think of hobbies, trips, or friendships to be renewed. I found it my kind of sanity therapy. You can choose a primal scream instead, whatever works for you as an escape valve.

Your Survival Strategy does not end with the death of your LO.  It has to extend at least as far into the grieving period as the turning point at which renewal starts (Book 11). Grieving presents risks of depression, isolation and giving up.  Some of your dreams of Life After Dementia have to develop into plans and progress before a you can feel you have survived.


Divorce?
Following years of changed behaviours, lost empathy and eroding relationships, many couples are driven to consider divorce. This question frequently arises before diagnosis is reached, but also after dx. And the initiative can come from either the partner with dementia or from the carer.


The carer who observes the degenerating cognition and the changing behaviours (Ref: Managing The Rage Stage) will most commonly remark “This is not the person I married.” In many cases, that is almost literally true, when obsessions and rages have changed the personality of the patient and simultaneously eroded the couple’s relationship.


Often, the same behaviours go un-noticed by other family members who see the patient infrequently, for short periods, when on their best behaviour (“show-timing”). Similarly, the patient’s doctor, with short consultations, has no opportunity to assess the trends (Ref: Diagnosing Dementia). The carer, as a result, becomes increasingly isolated or alone in this perspective, often concluding the patient has become a complete jerk and is left unvalidated.


The patient most commonly has no insight into their own degraded behaviours (this is anosognosia, wholly involuntary and not to be confused with denial) but can observe the results of the failing relationship, the harsh words, the time sought apart. So the patient too is likely to initiate divorce, blaming the carer and perceiving no fault in him/her-self.


Divorce is not necessarily a bad outcome and is not necessarily avoidable. When divorce is initiated by an undiagnosed patient, the carer may not be motivated to contest the matter and may be constrained by privacy considerations from providing complete evidence. After diagnosis, medical records become subject to further privacy constraints.


In some western jurisdictions, divorce can provide a separation of the partners’ assets so as to protect the carer from becoming liable for the future care costs of the patient.  The advice of an elder care attorney should be sought immediately if divorce is contemplated.  Financial liability may be able to be simplified and reduced.   A divorced spouse will not subsequently be next of kin to the person with dementia and will not be able to make decisions for the patient’s medical care.

Your Ease of Mind

You are overwhelmed.  You have extra work.  You have duties outside your normal role.  And you are grieving the progressive loss of your relationship.   This load is heavy and the emotional load that comes with it has some unfamiliar elements.

Typically, by the time a patient reaches a diagnosis of FTD, the disease has reached the midstages of its progression. Diagnosis may come ten or twenty years after the onset of the disease because symptoms are slow to develop and become recognised as trends. It is not only the symptoms of dementia which become more apparent over this time.  The relationship with the caregiver suffers damage concurrently, for reasons not correctly recognised or understood until diagnosis provides some explanation. Sometimes the caregiver’s response undergoes an emotional detachment done for survival. That relationship damage may not be wholly reparable. The damage occurs incrementally, by surprise, as a spouse reacts by withdrawal from incidents of failing empathy and changed behaviours within the undiagnosed person with dementia. 

You are on a journey you did not seek.  It may have come wholly as a surprise to you when you first learned that the person you care for has dementia.  The emotions of grief, sadness and loss may exceed any such emotions you have previously experienced.  That burden will so overwhelm you that you will become an emotional casualty of your journey with dementia unless you can find a survival strategy.

There are opportunities that differ in every individual journey. But there are some that are common.  The first is to recognise that, for you, there may be a life after dementia.  As soon as that sinks in, you will ask yourself its shape and a dream is born.  There is little opportunity during your caregiving journey for that dream to evolve into anything like a plan, but in that dream there is hope and hope is nourishing.

The second may surprise you as it did me.  A diagnosis of dementia contains an element of relief.  There was nothing you could have done to avert the onset of the disease and there is nothing you can do to stop the inevitable degeneration.  Your burden carries no element of blame or shame.  Recognition brings a balm.

The third is your journey offers you opportunities for happiness and pride.  You might discover you have an unsuspected Mother Teresa gene.  You may have memories of happy times as you sit with the person for whom you are caring.  There are moments of intimacy in acts as simple as helping them to eat or drink.  These emotions may not have come your way had you not taken this dementia journey together.

Fourth is that you are not alone in adversity.  You will meet other carers and, in some, you will find a kind of comradeship that comes from facing the same challenge.  You will encounter some dedicated people and you will see them under strain, when they reveal much character.  If you make the time to acknowledge them, you can make lasting friends. Find your tribe, your support group. It may lie online or be an in person support group, it may be family or friends. You may be surprised who is still with you at the end of this journey… and who is not.

One Day at a Time:

You will encounter much advice urging you to not get too far ahead of yourself. When caring duties are onerous, survival becomes a daily issue and looking ahead can be overwhelmingly depressing. 

Along similar lines is the advice “Apply your own oxygen mask first.”  The ‘oxygen mask’ anecdote is a reminder that the carer is the one in charge now (and it was not always like that). The LO can no longer make quick, correct decisions, and the carer must do that every time and be ready to do it again tomorrow if necessary.

But the caring journey is unlike an airplane emergency.  Caring is a marathon.  I am not enamoured of analogies like ‘oxygen mask’ or ‘parachute’. But they serve a purpose when a carer may otherwise panic and not find a solution.  There is help available. There are strategies that make the caring journey survivable.

To be around for your LO in the future, you must survive every crisis.  To do that, you have to take care of yourself, all the time.  You are now the only responsible, capable adult in this relationship.  It is not selfish to look after yourself.  If you are run into the ground, you cannot effectively care for your LO. Bottom of Form

The other books in the Carer Fast Track® Series:

Tips For Newbie Dementia Carers: The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 2) Kindle Edition

This is a ten minute introduction designed to fit within the limited time resources of Newbie Carers.  It is brutally brief in introducing subjects avoided by the major associations. This book links to the Caregiver Survival Guide.

Tips For Communicating: The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 3) Kindle Edition

One most important symptoms of dementia is failing communications within a family afflicted with fronto-temporal dementia, FTD.  Much can be done to improve the journeys of each family member by learning better communications. 

Alzheimer’s disease typically begins with cognitive problems resulting from memory loss.  But the onset of FTD is marked by changes to the individual’s personality, social behaviour or language abilities. This is due to the specific functions performed by the areas of the brain affected by FTD. The frontal lobe has roles in mood, personality, emotional expression, self-awareness, logic, sequences and judgment. The temporal lobes, which process sound, also play a key role in understanding and using language, and in the management of sensory input, including pain, sensory stimuli and emotion. Damage first to the left temporal lobe results in disabilities concurrently in comprehension and expression, but also to the processing of details and sequences.  Damage first to the right temporal lobe sees disabilities in context and big picture issues, behaviours, obsessions, empathy for others.  All these different varieties of dementia incur communications impairments which can be better managed with the toolkit of skills uniquely published in this book.

This important document describes ways to communicate with a loved one who suffers from FTD. It includes critical proven tips for carers to ease their path on this FTD journey. This is information unavailable on the main dementia websites or in published resources.

Diagnosing Dementia: The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 4) Kindle Edition

What carers need to know.

What diagnosis is and what it is not.

When to say “Stop !”

Who needs to know and how should they be informed?

What next?

Take Genetic Testing? The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 5) Kindle Edition

Why get genetic counselling first?

What is learned?

What is not learned?

Who needs to know and how should they be informed?

Who should decline genetic testing?

“I’m FINE!” Coping with Anosognosia. The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 6) Kindle Edition

Never heard of “anosognosia”?  Nor have many health professionals.

It is your understanding of the concept that is important. Many people wrongly think this is “denial”.  But this is involuntary.  Lost cognition prevents the patient having self-awareness.

What should you do, and what should you not do?

Managing The Rage Stage. The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 7) Kindle Edition

When dementia attacks the frontal lobe, fading inhibitions and rising obsessions are frequent outcomes.  With these emotional filters not working normally, rages are frequent outcomes.  Anger giving way to violence is a symptom in more than 20% of people with FTD.  These symptoms are most often a feature of the midstage of the disease, sometimes the symptoms causing a person to be diagnosed with FTD.  When the symptom is a temporary feature, it dominates the caring relationship.  Then it is called “The Rage Stage”.

These behaviours are among the most difficult for carers to understand and manage.  This book is uniquely dedicated to the management of rage. 

REVIEWS:

“Great” …”I must say that I was profoundly moved by your descriptions of what people have to live with, and the style and content of your practical advice.  Very few people are aware of the extent to which a family caregiver must at times subjugate their entire personality to the person that has been created by the FTD, in order to keep the peace and stay safe.  Most people would give up at a very early stage and I salute those who persevere from love and duty.  You have made a very good description of it, that I am sure will be helpful to many people.”

Professor June Andrews RMN, RGN, FRCN, OBE

“It is so valuable. When you have it published would you let me know where so I can send others to read it?” 

Barbara Karnes, RN, Award Winning End of Life Educator, 2015 International Humanitarian Woman of the Year 

Selecting a Dementia Residence. The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 8) Kindle Edition

Selection Criteria

What to look for

What to ask

What you should ignore

Managing Dementia Placement. The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 9) Kindle Edition

Here’s the plan

Backup plans

Choosing your help

You, afterwards

Coping with End of Life. The Proven Formula for Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 10) Kindle Edition

For this subject, there is a lot of published help.  The issue is finding the right material to read.

Grieving starts early on the dementia journey. But there is more to come, including your own personal surprises.

Picking Up The Pieces. The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book11) Kindle Edition

There is a way to start your renewal and to get that under way.

Tips For Newbie Dementia Carers:

The Proven Formula for Successful Care! (Carer Fast Track® Series Book 2) Kindle Edition

This is a ten-minute introduction designed to fit within the limited time resources of Newbie Carers.  It is brutally brief in introducing subjects avoided by the major Associations. This book links to the Caregiver Survival Guide (Book 1).

 Tips for Newbie Dementia Carers is deliberately a dangerous venture. Every dementia journey is different in the symptoms portrayed, the rate of progression, the time of diagnosis and the stage of the journey at which a caregiver reads the Tips.

In my wife’s 20-year journey with dementia, I got to know over 200 people with dementia, their stories and their caregivers. Many times, I have felt (or other carers have said) “I wished I had known THAT a couple of years ago”.  “Tips for Newbie Dementia Carers” attempts to touch briefly on the many subjects each caregiver will/may encounter.  The idea is to help you choose what things you do first and to prepare you for those subjects you choose to leave for later.  For each subject raised, there are hints and references for where to learn more. This is a portrait done with a six inch brush. No subject is addressed here in detail.

Your Journey with Dementia

Dementia is a term used to describe a global malfunction of the brain, which causes memory loss and changes in behaviour and personality for the affected person.

There are numerous variations of dementia symptoms and causes. All affect three functions of the brain — language, memory and decision-making. All are fatal, degenerative diseases with no cure. For some, including the most common which is Alzheimer’s Disease, there are medications which can slow or moderate progression.  For all of the Fronto-Temporal Dementias (FTDs), the only available medications are to moderate symptoms and there are no drugs effective in slowing the progression of the disease.

A caregiver embarks on the dementia journey with the person with FTD (sometimes referred to as “the patient” or “the loved one (LO)”).  Many caregivers are the spouse or a relative of the LO.  As the LO loses some mental faculties and aspects of their personality, the carer loses and grieves aspects of their relationship. “Anticipatory grief” and “Living bereavement” are real, hurtful, and difficult to address. So is carer burnout (see Book 1 in this Series).

Diagnosis and Symptoms

There is no pathological or other objective test for FTD before autopsy. FTD is diagnosed by the recognition of symptoms and a trend of degeneration.

Each person with dementia exhibits symptoms when different portions of their brain come under attack by the disease.  With each of the variations of FTD, the gaps between neurons and synapses become clogged with accumulated, misfolded proteins. The neurons misfire, causing intermittent symptoms, then die and dissolve. Parts of the brain atrophy and are replaced by fluid so that the brain, seen on a scan, appears to shrink.

When the left temporal lobe is the first part of the brain affected, the first symptoms observed are difficulties with expression. Wordfinding and comprehension suffer concurrently. This is termed Primary Progressive Aphasia or Semantic Dementia.

When the right temporal lobe is first affected, the first symptoms noticed are mood and behaviours and lost empathy.  This is termed Behavioural Variant (bvFTD).

When the frontal lobe is first affected, it is inhibitions and executive functions that are damaged. Obsessions may arise. Difficulties are experienced in daily tasks and in following sequences. Household products may be confused. Objects may be wrongly thought to be food.

Every FTD patient experiences their own unique combination of symptoms depending on the particular functions of their brain damaged. Some symptoms are intermittent because neurons may sometimes fire and sometimes not.  In addition, the brain has “plasticity”, the ability, in time, to find another pathway to a sought memory. These intermittent symptoms mean the patient’s disabilities are not always evident to others. Trends may not be recognised. Diagnosis is likely to be delayed.

Later in the FTD Journey

Typically, by the time a patient reaches a diagnosis of FTD, the disease has reached the midstages of its progression. Diagnosis may come ten or twenty years after the onset of the disease because symptoms are slow to develop and become recognised as trends. It is not only the symptoms of dementia which become more apparent over this time.  The relationship with the caregiver suffers damage concurrently, for reasons not correctly recognised or understood until diagnosis provides some explanation. Sometimes the caregiver’s response undergoes an emotional detachment which, consciously or unconsciously, is done for survival. That relationship damage may not be wholly reparable. The damage occurs incrementally, by surprise, as a spouse reacts by withdrawal from incidents of failing empathy within the undiagnosed person with dementia.  An intimate spousal relationship may develop into a caregiver role. Divorce may have occurred at the instigation of either party.

A person with FTD is losing some abilities to think. At the same time, emotions are unimpaired and run at full strength. That combination causes confusion, disorientation, mood changes and apathy. Over the course of the journey with dementia, additional portions of the brain come under attack.  Eventually the symptoms experienced tend to merge across the different variations of FTD.

Eventually, if the patient survives the many risks and hazards which arise from their failing cognition, their brain loses the ability to maintain the most basic bodily functions. Their speech deteriorates and they may become mute. They lose continence. They lose the ability to rise or walk. They have difficulty swallowing which may trigger aspiration pneumonia. Eventually, vital organ failure brings death. That sounds awful.  But there are worse ways to die than with no cognition, therefore no fear.

For Newbie Carers- First Steps

  • Once a physician (having undertaken neuropsychological testing) suspects FTD, undertake only one more appointment, for an MRI (a magnetic resonance imaging scan). This will identify any injury that may be operable. Do not bother with more “expert” attempts at diagnosis as they are stressful. If the MRI shows “atrophy consistent with age” or “no significant abnormalities”, stop! You have achieved the objective, there is no operable condition. If the MRI shows “significant/material atrophy of frontal/temporal/parietal lobes”, stop !  You have achieved sufficient evidence confirming a diagnosis of FTD.      Yes, a PET scan can allow a superior distinction between different dementias but it is likely to produce no actionable information. A diagnosis of FTD is ‘only’ an opinion formed from observing symptoms. There is no definitive test prior to autopsy.
  • Your journey with dementia started years ago. Onset occurs typically more than ten years prior to diagnosis.  There was nothing you could have done to avoid it, slow it or change it. Now you know the cause is this disease, you are free to blame the disease and forgive the patient. All those symptoms you observed are now explained. It is important to note that you are already in the mid stages of your journey with dementia.
  • The important information varies greatly with individual cases. Where anosognosia characterises the case (when the patient insists “I’m Fine” and is unable to recognise his own disabilities), there is no point describing the disease or symptoms to the patient and all advice needs to be couched as “typical precautions at your age and stage”. Where the patient is uncooperative and combative, there is no point offering any advice to the patient. In other cases:
  • Use the opportunity immediately to get your insurances, will, advance care directives and powers of attorney in place. A delay may cause your patient’s wishes to be later challenged on the ground that he/she lacked competence.
  • Get support. Involve other family and friends in the caring role early in the journey so they learn the behaviours of the person with dementia and the appropriate responses. If you leave it until later, the gap becomes too daunting.  Consider joining an online forum.  Consider whether you would benefit from counseling.
  • Scan and share with relatives the important documents including advance care directive and powers of attorney (and the location of the originals of very important documents like deeds and wills).
  • Learn the techniques for getting reluctant patients to attend to Powers of Attorney/PoAs. Be willing to brief an attorney in advance. Consider seeking the advice of an elder lawyer regarding notifying the patient’s employer. Some have to stop working immediately because serious errors in judgment may put the employer at risk. Notifying the HR department avoids unfair dismissal and can help watch for the patient’s interests.
  • Learn a long list of technical skills, including
    • loving deception(one of “the D’s” )– is partly along the lines of white lies to make things go more smoothly. It is also partly along the lines of not saying / explaining everything so as not to get some new problem going. You can think of this technique as “therapeutic responses” designed to avoid escalation of emotions.  Our LO’s with FTD no longer process as they did; the kinds of discussions one has had in the past (or could have had in the past) cannot happen now. So, sometimes it is just not saying everything — not bringing up things that are important in regular life. You tell the FTD person or DON’T tell him whatever it is that is necessary to get him to do what is best for him and gives you the least amount of blowback.
    • The “Ds” are delay, distract, defer, deflect, (lovingly) deceive.
    • The New Yes, and “Yes We Have No Bananas”. The New Yes is a validation instead of an affirmation. “Yes” is now not necessarily an affirmative, it is more like an acknowledgement that you heard him. It says ‘I understand your comment or request and will address it’. It is used to keep a communication channel open when a “No” will instantly close it. “Yes We Have No Bananas” goes hand in hand with “the D’s.” The basic idea is, never say NO — always give an answer (no matter how unreasonable the demand) that sounds like YES. LO: “I want to do X /We need to do X/You must do X.” Sometimes it is “Do it NOW!” You: “Yes, we will see what the doctor says at the next appointment.” “NO” shuts him down and he hears nothing past “NO”. The two strategies are really important for avoiding confrontations! for example — your person with dementia wants to do something unwise (buy something; get driver’s license back; move to a new place; etc.), and you say: “Sure! Let’s look into that right after X happens!” Or, “That’s interesting, let’s look into that. Look over here!” Don’t say NO. Put it off. If push comes to shove, Deflect Blame (another D) away from you, onto someone else in authority — because you are probably being blamed for everything already. If it doesn’t work the first time you employ this technique, there will come a time when it will be effective owing to progression.
    • How and Why to Lower Arousal
    • When to get close
    • What to write and why, dealing with failing comprehension (Ref: “Tips for Communicating”)
    • Why to say What and not bother to say Why. How to keep communication simple.
    • How to be the patient’s advocate.
    • How to minimise confrontations. Do not assume you can converse any longer as peers. You listen and respond in an agreeable manner or a neutral one. Never disagree or give a contrary opinion.  (Ref: “Managing The Rage Stage”)
    • Why to often be ready to down tools and respond with spontaneity. If your person with dementia is “all about me”, they genuinely see no other priority. When you are able to go along with a whim, it will help avoid conflict. Your flexibility is key.
    • Responses to obsessions. Reasoning absolutely will not work, with FTD. When logic circuits are broken, logical explanations fail. Switch over to the “Ds” and the New Yes.
    • Keeping family members involved in caregiving. Invite them to be involved in the care of LO. Bring their understanding along to keep pace with progression, avoiding a gulf too wide to bridge.
    • Dealing with family Backturners. Make specific requests: “Please take him bowling Tuesday at 2pm for two hours while I get the shopping done.”
    • Dealing with failing personal hygiene including showering, cleaning teeth, changing clothes.
    • Dealing with incontinence.
  • Assess your particular risks and exposures to:
    • uncontrolled spending by patient. (Use a single account with a regular allowance, debit card access, and no overdraft protection.)
    • patient falling for scams
    • patient giving away money and possessions
    • patient falling for “girlfriend” scams
    • patient succumbing to porn
    • sexual obsessions
    • inappropriate behaviours
    • accusations and other non-physical rage stage symptoms
    • walkouts and getting lost
    • aggression and violence
    • driving with FTD
    • social isolation
    • physical isolation
    • “a broken thermostat”.  FTD patients are notorious for lessened tolerance of ambient temperature fluctuations.
  • Understand that this disease is fatal and is characterised by progressive cognitive decline. As your person with dementia loses identity, you both will lose your relationship. Individual responses must differ.
  • Very few carers are able to continue to provide care at home. As the workload increases, the 24*7 role generally becomes too great for one or two carers. You are likely to need a three-shift residential placement with skills matched to the demands of your patient. Much guidance is needed in identifying a suitable residence and is available from online forums.

“Tips for newbie carers” is a huge topic, very scary for real newbies. When your eyes are glazed by fresh diagnosis (dx), there are so many subjects coming up at once.  Each newbie has different issues, concerns and values which are not addressed by the plethora of superficial brochures thrust upon them.

Overview

Top of Form

Bottom of Form

Dementia is a progressive deterioration of cognition. It causes disabilities in logic, intellect, memory, learning and social skills interfering with normal activities and relationships.

There are various types and causes of dementias, all of which are fatal diseases. Alzheimer’s disease and vascular dementia are the most common, with various frontotemporal dementias being more rare. Some patients have combinations, termed “mixed dementia”.

There are good government and academic websites with more information.  While there is no cure, there are techniques that help greatly to manage symptoms and there are medications which can help moderate anxiety and some common behaviours. Beware of scammers pushing proprietary cures.

Addressing Confusion:

My whiteboard reminders (inside the pantry door) for Carole and me read:

[Carole]
Be aware of exhaling to lower arousal. This allows brilliant Right Side to do sequencing and word finding tasks. (Ref: Tips For Communcating)
Trust.
Avoid frustration and anger which cause speechlessness.
Write notes as well as speak.
Touch. Get close.
Say what. Don’t bother to say why.
Be ready to down tools and act on whims and spontaneity.
Allow LO time to process.

These tips helped us often. But failures of understanding and even complete misunderstanding still happen. “But you said… [the exact OPPOSITE of what I said and repeated]” Complete misunderstandings seem to arise when the subject is understood by the person with dementia but one or two critical words of context are missed, allowing the message to be fundamentally reversed. Writing notes is designed to counter that. The message can be read in slow-time and re-read.  But there is no opportunity for writing notes when you are driving the car or managing a crisis…

Confusion is a very common symptom:

Losing your mind is nothing compared to the terrible effort of holding on to it.

In many of our LOs, I think this effort is a struggle to understand. The wish to understand crashes into the inability to understand. The result can go in many different directions… confusion, distress, anxiety, refusal, rage, fear/terror, resignation.

These emotions are heightened by a move into residence. And the very persons with dementia whose behaviours at home are so extreme as to necessitate urgent placement are the same persons whose responses to the change of environment are most extreme. It can be very distressing for carers and family to watch their loved ones live through this confusion.

Responding to Urgency:

Urgency is a symptom of the disease.  The description “A whim of iron” is accurate.

I found it helped to think “This is the dementia talking”.  After consulting with the head of our Neuropsychology Dept,  Robert Moss, I would lower Carole’s arousal (ref: Tips For Communicating Book 3 in this Series) and respond with spontaneity whenever possible.

Faced with anxiety, resist asking her to “stop it”. Try to avoid starting any response with “No” because it will stop her from understanding what follows. Instead, start every response with a “Yes” or “Sure”, “Certainly”, “Good idea”. It keeps her listening.

Apathy
Apathy is the most common neuropsychiatric symptom of dementia, with a bigger impact on function than memory loss — yet it is under-researched and often forgotten in care.

The clinical literature talks about this symptom exclusively as “apathy”.  But the symptom is most commonly “entropy” where the person with dementia loses not only interest, enthusiasm (apathy) but energy (entropy).  They lose the ability to walk far or fast. They would rather sleep than be bothered with activity. As a result of diminishing exercise, they may suffer other health issues, have disturbed sleep, wander without objective.

Apathy is the most common symptom of dementia.  Lack of activities is troubling for some (but not all) patients and for all carers.  It is poor for the patient’s overall health.  But there is only so much encouraging that a carer can give before it turns to negative nagging.

The activities best suited to dementia patients range with personal taste from quite active to very passive.  What surprises most carers is the degree of simplicity of activities that suit a person with dementia.  It is a big shock to find that a person who was, a year ago, keen on driving country trips now wants to care for a cloth doll.  Or a man who did household chores who now wants to play Patience or Solitaire or stack blocks.  Simple outings such as a walk to a coffee shop often suddenly become the most satisfying activity to choose.

Failing Empathy

The loss of empathy is often an early symptom of all the frontotemporal dementias.  Because it occurs before the other symptoms which cause family members to seek diagnosis, lost empathy is often not identified correctly by family members.  The first thought is typically that the patient is being a “Jerk!” or “Bitch!”

If these behaviours are raised with a medical practitioner, they will too commonly be mis-diagnosed, frequently as “marital problems”. Many couples are referred for counselling which, of course fails because it seeks to address the wrong issues.

Eventually, as other behaviours attract attention, the diminishing empathy may become recognised as a symptom of dementia.  Like other symptoms, there is no way to postpone nor achieve more empathy if the pFTD is already on that road. It begins early and hits us hard. In many cases, the damage done to the relationship is so severe that it is irreparable once the problem is finally recognised as “dementia”.

As a patient loses empathy and aspects of their personality and identity, the carer loses their relationship.  By the time that other symptoms of dementia arise and trigger neurological investigation, it can be 10 years after brain changes and loss of cognition and neurons occur. By that time, the carer will have been responding to the patient with irritation, judgement, withdrawal, anger or a host of other emotions and responses. Had we realized at inception that lost empathy was a disease symptom, a circumstance beyond the patient’s control we may have been able to avert the negative responses and the damage of years’ duration.

Several aspects of lost empathy add to the issues for carers.  Like other dementia behaviours, the symptoms are intermittent for two reasons.  Neurons fail intermittently before they die.  And the brain’s plasticity sometimes finds other ways to find the answer.  Examples of lost empathy are observed frequently only by the spouse who has 24*7 contact.  To other family members, to friends, to medical practitioners, the symptom is rarely seen and is not perceived as a trend.  Hence they tend to conclude the patient looks “Fine”, “Normal”.  And the spouse lacks support for the observations, so can become isolated.  

The thing that will most help us counteract loneliness and social isolation  is to find a community of carers of FTD patients, a support group, others who are with us on this road to realization and discovery of ways to cope with the unimaginable. These people will listen to us as we reveal what behaviours we now live with. They can assure us we are not crazy and that no matter who else does not see what we see, our fears, concerns and observations are valid. The more people we can find whose loved ones are similar to ours, the more experiences we will hear about and the more varied ways of dealing with things will be discussed. We will be validated and no longer so alone in this.

Failing that, we need a firm friend who believes us implicitly simply because we say these things are happening. This friend can be a sounding board, a way for us to bounce ideas off them  in order to come up with a game plan, a blueprint of what to do and how to respond going forward as we choose to stay and care for our beloved family member.


The carer must overcome the notion that lost empathy is something the person with dementia can control. It is another very real case of our having to change our mindset and reactions or responses because our loved one cannot.  When we are accustomed to logical and caring actions from a spouse, and then we are confronted with unexplained lost empathy, it is very difficult for us to really internalize how impossible it is for the person with dementia to behave differently. The lost empathy can come and go for years before eventually becoming evident to infrequent observers.

Faced with failed empathy, a carer can best respond by changing themselves.  At a minimum, the carer must lower their expectations for normal, caring attitudes from a person with dementia. Usually, other standards must also be lowered, for behaviours, for hygiene, for social interaction.  Some carers cannot continue an intimate relationship and morph, either by default of by design, from spouse to live-in caregiver.  Many spouses choose to sleep apart.  Some divorce.  The following notes may help guide your actions in dealing with lost empathy:

  • It is a frontal lobe function, closely related to inhibitions and often accompanied by inappropriate social interactions or sexual actions.  The loss of empathy is a very early symptom and may predate other more recognisable dementia symptoms.  For example, the first noticed inappropriate social interaction may come 5 to ten years later.

​Carers typically react first to lost empathy and intimacy by hurt feelings and anger, suspecting their former solid relationship, or

  • imagining they are crazy when the person with dementia surfs in and out of behaviours.  A diagnosis of dementia may yet be ten or more years in the future, far ahead from first, sporadic, unrecognized symptoms. Once diagnosis is reached, the lost empathy may, in retrospect, be recognised and placed in perspective as an early symptom of dementia.  For many carers, that understanding comes too late to repair or undo the relationship damage.
  • ​It really helps to have family members who understand, but that does not always happen. An online forum for support and understanding may help somewhat. Throw a pity party? ​It is possible that counseling with the right person might help, but generally we would be informing the therapist of behaviors and the disease in general. When dementia is yet to be diagnosed, counseling can be only of general support.

By the time we realize it is caused by a disease with no cure, empathy has generally been lost for years.  The main cost of lost empathy occurs with the people living with the person with dementia, usually the spouse or close relatives.  Some carers struggle to know when they should hold a person with FTD accountable. “How much is he responsible for?” “Are there any normally functioning pathways or have they all become corrupted by the disease?”  “ Are these behaviours ‘Assholery’ or dementia?”  Eventually, they learn to let it go. There is no way to tell, and trying is pointless.  Reaching diagnosis can be cathartic.  It is possible then to blame the disease for all past troubling symptoms.  But that will not necessarily restore family relationships damaged along the way. You will encounter well-meant advice about things you can do to “reduce your risk” of contracting dementia or of “delaying the onset” of dementia.

Dementia and Driving  At the same time that you are pursuing a diagnosis of dementia, the difficult subject arises :  when should a person with dementia stop driving?  The same behaviours and symptoms that caused you to search out diagnosis are affecting driving performance.

The ability of a person with dementia to drive is determined not by their skill. The determining factor is their ability to make correct decisions in an emergency. The brain when affected by dementia can ‘get around wrinkles’ when it has time and when arousal is within the required band.  (This is termed ‘plasticity’, the ability of the brain to find another way.) But the brain with dementia freezes in an emergency and arousal instantly elevates. Denied the time and conditions it needs to perform, the brain with dementia makes no decision or the wrong decision in an emergency.

The person with dementia can typically not perceive the problem. Their inability to recognize their own symptoms (called ‘anosognosia’) means they struggle to accept why they should not drive. Their response looks like ‘denial’ but is different, they really cannot see the issue.  The subject becomes very challenging for them.  It is more than their driving that is at stake.  It is more than their independence. Their license is seen as a validation of their ability and identity and its threatened withdrawal is a devastating loss.

Managing this subject is likely to be a great early test of the carer.  It will call for great empathy (think Mother Teresa scale).  It will be a protracted process calling for patience.  The carer has to manage the risk and keep the person with dementia safe.  There are consequences for other road users, legal and insurance issues.  Emotions run high.  All of these demands fall upon a carer at a time they just learning the skills of the trade.

The same principles apply to this subject as all others.  The carer should avoid becoming the person blamed, because the carer has a unique long-term relationship to protect.  The carer should ask the doctor to refer the decision to the driving license authority, who will conduct an assessment.  It is the authority which makes the decision.  The carer’s sympathy and allegiance can remain wholly with the person with dementia.  The communication skills required are described in Book3 of this series.  The management of any rages is described in Book7.

There are very many hypotheses, from living further from main roads (for better air quality) to improved diet, supplements, exercise (mental and/or physical), social activity, volunteering and spiritual activity.  Little harm is done by these recommendations for better health, except they imply that if you have dementia, it is your fault and you could have done better.

You are reading this book because you are dealing with symptoms suspected of being caused by dementia.  If so, the onset of the disease occurred many years ago, the progression of symptoms was slow, intermittent and subtle. 

Exercise, diet and the many proposed activities may well improve your health but may do nothing at all to the course of the disease.

Tips For Communicating:

The Proven Formula For Successful Care! (Carer Fast Track® Series Book 3) 2nd Kindle Edition

One most important symptom of dementia is failing communications within a family afflicted with fronto-temporal dementia, FTD.  Much can be done to improve the journeys of each family member by learning better communications. 

Alzheimer’s disease typically begins with cognitive problems resulting from memory loss.  But the onset of FTD is marked by changes to the individual’s personality, social behaviour or language abilities. This is due to the specific functions performed by the areas of the brain affected by FTD. The frontal lobe has roles in mood, personality, emotional expression, self-awareness, logic, sequences and judgment. The temporal lobes, which process sound, also plays a key role in understanding and using language, and in the management of sensory input, including pain, sensory stimuli and emotion. Damage first to the left temporal lobe results in disabilities concurrently in comprehension and expression, but also to the processing of details and sequences.  Damage first to the right temporal lobe sees disabilities in context and big picture issues, behaviours, obsessions, empathy for others.  All these different varieties of dementia incur communications disabilities which can be better managed with the toolkit of skills uniquely published in this book.

This important document describes ways to communicate with a loved one who suffers from FTD. It includes critical proven tips for carers to ease their path on this FTD journey. This is information unavailable on the main dementia websites or in published resources.

REVIEWS:

 “some great content here!”  Dr Elissa Campbell,. President of Palliative Care Western Australia and Chair of the ANZ Society of Palliative Medicine’s Special Interest Group in Palliative Care for Older People

Communicating is one of the most important of human brain functions and one that progressively becomes a greater disability with FTD. It is an activity shared by a person with FTD and their spouse, carer, relatives and friends. But there are few sources of advice or tips to carers about how to communicate as the disease progresses.

FTD FrontoTemporal Dementia

Caregivers will be more successful if they recognize all dementias as a progressive form of brain failure and not simply a “memory problem.” The brains of individuals with dementia are undergoing progressive deterioration which eventually affects nearly all areas of functioning −from the ability to recall events, exercise judgment, and control impulses, to the loss of language and field of vision.

With FTD, communication difficulties often occur concurrently with failures of planning and other executive functions. It is sometimes difficult to tell whether a particular problem is a “doing it” issue or a “talking about it” issue. 

This document summarises tips for communicating more effectively. It is focused on WHAT to do, with minimal explanation about WHY you should do that (except where knowing some of the WHY might help with the WHAT)

TIPS

for communicating with a person with dementia.

Talk to the loved one (LO)

Not to the carer or a family member. Do not prejudge the LO’s level of comprehension (because the LO may be insulted to be left out).

If communication of meaning with the LO fails, and you need the help of others, check afterwards with the LO that you have correctly understood the issue. “Albert, we think you are here to make your will, am I right?”

Speak Clearly to the LO

Make eye contact and face the LO directly. (All visual cues, even your attention, help to pass messages.)

Other conversations, background TV, radio or music all create distracting noise for the LO. The LO can become overstimulated or confused. Suddenly, getting some quiet for a few sentences becomes critical to communications. When you cannot control the environment… seek an escape. Enter the stairwell or other quiet space for a moment, saying “I can listen to you quietly here”. When listening, pay attention to the tone of voice and the body language of the LO, as these often convey more meaning than the faulty words.

Allow the LO time

Try to be patient. Thinking by LO takes a little longer. Urgency in your voice translates straight to anxiety in LO mind.

Break Down the Story

Smaller chunks are more readily understood. Reduce the complexity.

Say What. Do not bother to Say Why!

The short form we use is “Say WHAT, not WHY.” Again, the object is to avoid unnecessary complications and avoid logical deductions or sequences. (When logic circuits are faulty, explanations of the logic are likely to cause confusion.) The objective of your communications changes to giving comfort to the LO. You retreat from your old objectives of discussion or peer debate.

While you can still have discussions…

talk during the best time of day for your LO… when she is most rested, has just eaten, etc. Conversely, avoid talking to her when it is not the best time.

Keep Signs Clear in the house or Residence

“Undies”. “Back Door”. When declining cognition causes LO to be less well organised, signs can help for a while. Especially, direction signs can reduce confusion during temporary delirium such as after an operation.

Begin a Response with “YES!”

The “New Yes” is no longer an affirmation. It is a validation. It says ‘I heard your question/suggestion and I understand’. It is used to keep open the communication when the use of a “No” will instantly close it.

If he wants to visit a relative TODAY, answer “Yes, good idea. We have agreed with them we are going there for Thanksgiving.”

Think “Yes, we have no bananas.” This is very powerful medicine.

Many LOs adopt “No” as their habitual response. When they cannot process the options and consequences, “No” can appeal to them as a safe response. If that happens to you, then you will see profound results from your use of the New Yes.

Now!

LO urgency and impatience are common symptoms.

Where the carer can accommodate a whim with spontaneity, that can be an ideal response. But when you cannot drop everything momentarily, then Yes, We Have No Bananas is often your best option.

Semantic Dementia

Some patients remain fluent with normal phonology and syntax but increasing difficulty with naming and word comprehension (understanding of meaning). This is known as semantic dementia.

These people sound normal in their intonation, their conversational tone, but there are words wrong or missing. It is evident they struggle to find or choose the desired word, especially pronouns, nouns and names. Patients with these symptoms are said to have semantic dementia because these are the first evident symptoms of their failing cognition.

If the semantic memory they seek to access contains the word “cat” and information about what a cat is, but they fail to find that, they might say “nice doggie”. Neuropsych testing will also reveal deficits in picture naming with semantic errors being made e.g. “dog” for a picture of a hippopotamus.

An individual with dementia may, on average, miss one of every four words spoken to him. It’s not that the individual can’t hear what is being said: Auditory perception is one of the few brain functions to remain intact in the individual with dementia; however, the ability to comprehend language (a left temporal lobe function) is gradually lost. The part of the brain that controls the rhythm of speech (a right side function) remains intact.

Patients typically complain of a “loss of memory for words” involving, at first, less common words, especially nouns and particularly the names of people. They may complain of “hearing problems” when the real issues are difficulty with comprehension, or difficulty separating a conversation from the background noise. They may seek hearing aids, which provide little or no relief because they address the wrong disability.

The biggest issue in listening to such patients is deriving the intended meaning from what they say. A listener might be required to decode “that item” or “the other man who helped us, you know!” The task is usually totally beyond anybody without 24*7 familiarity with the thinking of the LO. Success requires a lot of time, patience, trial and error and some intuition.

The biggest issue in talking to these LOs is having the message correctly received. You might get “But you said X!” when you had said “NOT X” and a critical word was missed.

When these patients become aroused, they may be quite unable to speak. Or might get out only “Come… !” Any kind of stress, emergency or emotion can bring on this symptom. The solution, when you have time, is to lower their arousal. The most effective available technique is to notice the breath out. It requires not just exhaling, but noticing the act of exhaling. Consider whistling a descending tone.

Very often, there is no time for such remedies. You might have to guess quickly. “Is there a snake?” “Yes!”

For these patients, context is important. So, for them, keep sentences simple, but not too short.

Progressive NonFluent Aphasia

Some LOs have a breakdown in speech fluency due to articulation difficulty (poor word production), phonological and/or syntactic errors but preservation of word comprehension, referred to as progressive nonfluent aphasia.

Progressive non-fluent aphasia (PNFA) is the least common form of Frontotemporal Dementia and affects the ability to speak fluently. Patients present with difficulty communicating due to slow and laboured production of words often with distortion of speech and a tendency to produce the wrong word.

Some patients have slurring of speech whereas others are able to articulate words but produce frequent near misses (e.g. they say “silter” for “sister”). Understanding of word meaning is preserved, but patients with PNFA have problems comprehending sentences and following conversations, especially if there are a number of speakers. Using the telephone and communicating with groups of people is particularly difficult.

In a rare, related aphasia, patients will substitute “arm” for “leg”, produce novel words such as “sickser” for doctor and use complete nonsense words. This is Wernicke’s Aphasia.

The biggest issue when listening to these patients is decoding meaning when the near miss is not so near. Or the listener has less familiarity.

The biggest issue with talking to them is knowing the message was received and understood. Very often, the carer assumes the LO’s silence implies understanding when actually the LO is confused but seeks to avoid stating that. Avoiding background conversations is especially critical. Cafes often become impossible for any communication.

For these patients, brevity helps most. Subject and verb. Really keep sentences short.

The Aphasias, including Semantic Dementia

Collectively, these are branded “the language variants” of FTD. If a carer sees expression declining, for example a LO’s range of nouns collapses so almost all things are described as:

“doggies” for all living things

“items” for virtually everything except

“crap” for those few things that must be dealt with…

Then the carer typically thinks the LO’s comprehension is way ahead of the LO’s expression. In fact, comprehension is close to keeping track with expression, but its losses are less noticeable. Then, telling him something becomes fraught with risk. You may more wisely choose to show him something instead.

Different patients may respond in different ways to their progressive failing in expression. Some may quickly tend towards mutism while others say many words very difficult to understand. With much effort and empathy, a listening spouse might successfully deduce a subject (though rarely will the spouse be able to discern the LO‘s view, except on a favourite subject or obsession).

Behavioral Variant

If the right temporal lobe is involved then patients (or carers) often notice problems recognising previously familiar people. It is not uncommon for patients to talk to people as if they were strangers only to discover later that were old friends.

Day-to-day memory is relatively spared but may appear poor due to difficulty with expression.

For these patients, the communication function is relatively unimpaired, at least until late stages. But communication may become unsatisfying, and even avoided. That is especially common if the patient’s behaviour includes aggression or violence.

Then, smiles, body language, the Four “Ds” and “Yes, we have no bananas.”: are especially important to defuse situations.

The Rage Stage

Some FTD patients encounter a “Rage Stage”. This can take numerous forms and the symptoms are typically a “stage” during the middle period of the disease, before or soon after diagnosis. But for some FTD patients, the symptoms remain for the duration of their journey.

The classic rage stage is marked by anger, aggression and violence. But in some patients, the predominant symptom exhibited is negativity, where everything is described in terms such as “disgusting” or “worthless”. Another outcome is accusations, typically against the spouse or principal carer because they are responsible for everything, therefore are to blame for whatever goes wrong. They are the only target always within range.

The rage stage can occur concurrently with lost inhibitions, for which the symptoms can be socially and/or sexually inappropriate remarks and judgements or a porn obsession. The combination leads to colourful events in which damage is difficult to contain.

The main objective for the carer is to maintain their unique relationship or to end it in separation or divorce. The outcome to be avoided is one in which the relationship is prolonged but in a permanently damaged state unsatisfactory to both. The challenge is huge. There are tools that are useful in all cases and they include “Yes, We Have No Bananas” and the “Ds”: Delay, Deflect, Distract, (lovingly) Deceive. Other tools are unique to the individual symptoms. They might range from more help with communications to less help, depending what works.

“I’m Sorry You Feel That Way”

Duck skirmishes. Decline to be the focus of his combativeness. If the LO takes exception to something you do or say, do not engage. The worst thing you can do is to snap and scream because the issue will then escalate. Either remove yourself physically or verbally from the equation leaving the LO nothing to fight about and no one to fight with. It renders him helpless to continue his allegations.

Often, silence is preferable to antagonism.

When you cannot get away, caught in a moving vehicle, you may be reduced to just repeating periodically. “Yes. I’m sorry you feel that way.”

Body Language

Become comfortable with silence. Let her know that you are not anxious with “empty” time. It takes the pressure off of her. If she doesn’t talk, don’t feel the need to fill that space with your own banter. In these times, hold her hands, look into her eyes, enjoy quiet music, etc.

Use lots and lots of loving touch, eye gaze, and music. As language goes, touch, music, and eye gaze are the windows to the soul.

Pick Your Battles There are many things a carer may not like or may not want to have happen, but fighting them all is exhausting to impossible. Which are the fights you have to win to survive?

The loved one leaving a cooking element on, inviting a house fire? Essential. Take steps. Porn viewing? Unessential, though unappetizing. Not locking doors behind him and leaving the house vulnerable? Essential, but YOU will have to either run behind him and lock things up or find a way to keep the house secure if you are not there to do it. For ‘essential’ things, try to find a way to use the “Ds” to modify his behaviour.

Beware that Deflection, if perceived by the LO to be taking him away from a perceived course, might be taken to be criticism. So Deflection is safer if it is a wholesale change of subject. Glass beads to Amaze The Natives is the ideal style for survival.

Logic is No Longer Your Friend

Your loved one’s logic is destroyed along with those frontal lobe neurons which do planning and organisation and sequences. These failures take carers by surprise. Suddenly, skills become impossible. Typing disappears. Doing up a seat belt becomes too complex. Drawing a clockface or a childlike sketch of a house is too difficult. Then you cannot succeed by logic to persuade the LO to do anything. You might succeed by saying What you are going to do and declining to say Why. Using a carrot/bribe approach may succeed, or one of the “Ds”.

Arguing or debating will not end well. These logical processes are now to be avoided. Though it may seem from appearances or a lucid story that he is capable of a reasoned discussion, he is not. It may be very beneficial (producing a peaceful episode) to listen while not having an actual discussion.

Allow the LO to run with a thought/story/complaint however repetitive (obsessions are common as are favourite observations) Merely respond, if appropriate with a Yes We Have No Bananas style when you need to avoid stating support for his proposal.

Use positive and encouraging conversational ploys but initiate nothing of substance. When the carer must take charge of the couple’s entire lives, just do things without discussing them beforehand as you would have done earlier in the relationship. The carer is now the only adult in the marriage and needs to act like it. It takes a major shift in thinking not to involve our loved one, but it is a necessary step.

The Carer must Change Attitudes or Actions. The LO can no longer Adapt. When we finally realize that owing to the disease process our loved one is incapable of being different, we then find a way to adapt our thinking. The LO cannot so the carer must. Everything is up to us now. Factor him out as a helpmeet, a partner, a sounding board.

He will find your insistence on involving him in things annoying. They are YOUR things. Why should he care about YOUR issues, your appointments, your feelings, your anything? Your loved one is approaching or is already entrenched in the following mindset of want/don’t want and like/don’t like.

Take the LO’s side when they are agitated about an issue.

‘Take her side’ in any issue. Say things like “I’ll help you get started.” Give her jobs like stirring pots or watering plants or packing the dishwasher. Focus on what is left rather than what is gone. “We’ve still got us!” “Together, we can do it.” “I need you to do this while I do that over there.”

If his driver’s license is threatened and the LO thinks that unfair, support the LO’s position.  Let the authority be the ‘bad guy’ because you have a unique relationship to protect. 

But take this idea further and literally take their side.  Teepa Snow did a video reconstructing an incident where she literally took the side of a frightened dementia patient among too many strangers. The lesson stuck because I had done something similar with Carole in hospital in the middle of the night. What Teepa Snow did beautifully is capture the symbolism.
You stand alongside to show you jointly face an issue. When oral communication is failing, that kind of symbolism speaks volumes with low risk of being misunderstood.
And it has lots of application, once understood. If he is seated at a desk, you don’t speak from the other side of the desk. You walk around and stand alongside.
If she is mixing salad on a bench, you stand alongside making the burgers.
Practice the skill and it comes easily when things go sour.

Lower Your Standards. Expect Little and you will be Less Disappointed

As the LO loses cognition the carer loses much of their relationship. Conversation becomes unfulfilling, dreams and future plans recede. Don’t expect your loved one to care. Don’t expect him to participate when he “isn’t feeling it.” Don’t expect him to know anything. Don’t expect empathy, humor, involvement, conversation or positivity.

The carer cannot do everything that the couple could previously do. Forgive yourself some lower standards of entertainment, housekeeping, simpler meals, birthday presents.

Diagnosing Dementia:

The Proven Formula For Successful Care of a Person with Dementia! (Carer Fast Track® Series Book 4) 2nd Kindle Edition

Your Journey with Dementia

Dementia is an umbrella term used to describe a global malfunction of the brain, which causes memory loss and changes in behaviour and personality for the affected person.

There are numerous variations of dementia symptoms and causes. All affect three functions of the brain — language, memory and decision-making.  All are fatal, degenerative diseases with no cure. For some, including the most common which is Alzheimer’s Disease, there are medications which can slow or moderate progression during the early stages.  For all of the Fronto-Temporal Dementias (FTDs), the only available medications are to moderate symptoms and there are no drugs effective in slowing the progression of the disease.

A caregiver embarks on the dementia journey with the person with FTD (sometimes referred to as “the patient” or “the loved one (LO)”).  Many caregivers are the spouse or a relative of the LO.  As the LO loses some mental faculties and aspects of their personality, the carer loses and grieves aspects of their relationship. “Anticipatory grief” is real, hurtful, and difficult to address. Typically, the carer will not receive validation for their loss of relationship nor their anticipatory grief from friends and family who do not see them daily. Comments such as “You still have your spouse/dad/mom” can cause lasting hurt.

Recognising Symptoms

There is no pathological or other objective test for FTD before autopsy. FTD is diagnosed by the recognition of symptoms and a trend of degeneration.

Each person with dementia first exhibits symptoms when different portions of their brain come under attack by the disease.  With each of the variations of FTD, the gaps between neurons and synapses become clogged with accumulated, misfolded proteins. The neurons misfire, causing intermittent symptoms, then die and dissolve. Parts of the brain atrophy and are replaced by fluid so that the brain, seen on a MRI scan, appears to shrink. On a PET scan, brain activity in response to a selected stimulus, is characteristically different in a brain with FTD.  The onset of the disease may have occurred many years before brain abnormalities appear on a scan as material departures from normal. Scans years after the onset of the disease may be inconclusive or show minor change which is dismissed as being within the range of individual differences.  Symptoms may reach severely troubling levels before scans provide confirming evidence.

The first abnormal behaviours of FTD:

  • Errors of judgement, excessive spending, gifts or lawbreaking;
  • Misreading non-verbal cues. Failing to comprehend irony or subtlety;
  • Vacant stare and daytime naps;
  • Falls, failures of balance or coordination;
  • Lost dexterity, “all thumbs”;
  • Word-finding trouble, especially nouns.  Pronoun errors (he for she);
  • Junk food binge;
  • Disregard for the emotions of others (lost empathy).

When the left temporal lobe is the first part of the brain affected, the first symptoms observed are difficulties with expression. Wordfinding and comprehension suffer concurrently. This is termed Primary Progressive Aphasia or Semantic Dementia.

When the right temporal lobe is first affected, the first symptoms noticed are mood and behaviours and lost empathy.  This is termed Behavioural Variant (bvFTD).

When the frontal lobe is first affected, it is inhibitions and executive functions that are damaged. Obsessions may arise. Difficulties are experienced in daily tasks and in following sequences. Household products may be confused. Objects may be wrongly thought to be food.

Every FTD patient experiences their own unique combination of symptoms depending on the particular functions of their brain that are damaged. Some symptoms are intermittent because neurons may sometimes ‘fire’ and sometimes not.  In addition, the brain has “plasticity”, the ability, in time, to find another pathway to a sought memory. These intermittent symptoms mean the patient’s disabilities are not always evident to others. Trends may not be recognised. Diagnosis is likely to be delayed.

The Long Path to Diagnosis

As a carer for a person who may have dementia, you may not need to be able to diagnose the disease.  You do need to know why it is difficult, time-consuming, uncertain, likely to be delayed.  You do need to know how to gain the cooperation of your LO in the diagnostic process, perhaps repeatedly.  It will help greatly if you know how to present to the diagnosing practitioner the symptoms and trends you have experienced.  You do need to know what the results mean.

The majority of carers start the path to diagnosis by complaining to their doctor about observed symptoms of their LO.  It might be a change in their behaviour towards some new obsession, increasing apathy, lost ability to find their words, no empathy for their family members… for some reasons, you think they are just not themselves.  You probably do not suspect a neurological disease.  The doctor may see signs sufficiently disturbing that they refer your LO to a specialist, possibly a geriatrician, perhaps a neurologist or a neuropsychologist.

A few carers may have some experience of dementia or cognitive disabilities, or have some friends or family with experience, or they do some research of symptoms by themselves.  They may come to an appointment with some suspicion about the likely outcome.

I present below the clinical diagnostic criteria (two pages) that are recommended practice for medical practitioners.  (This sample applies explicitly to the behavioural variant of FTD but similar issues for the carer arise from the clinical criteria for other variants.)

 I will then explain some of the issues that arise for you, the carer, and suggest the practices you can best adopt.

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DIAGNOSTIC CRITERIA

Criteria for Behavioral Variant FTD

In 2011, an international consortium developed revised guidelines for the diagnosis of behavioral variant frontotemporal dementia based on recent literature and collective experience.  The following chart delineates the present criteria for bvFTD.

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