"THE LIGHTS ARE ON BUT NO ONE IS HOME"
Mum suffers no memory loss, orientation is intact, knows everyone around her, can drive, her language skills are great, and seems to be physically well to boot, yet has been diagnosed by a neurologist as having dementia!
Is this even possible?
Sadly, this is often the case, as Bruce Willis's diagnosis last week, of Frontotemporal Dementia, or FTD, confirms. Many variations of this horrid, yet rare, dementia exist and the most obvious are the language and motor impairments/variants.
Having had two family members diagnosed with this awful disease, it is a condition I know of only too well.
The variant little known of, and talked about, and possibly the most frightening for carers, is the behavioural variant of FTD. I suspect Bruce Willis showed signs of personality changes or odd out-of-character actions, that lead to his current diagnosis and a change from the initial diagnosis of aphasia to the FTD behavioral variant.
Of all the FTD variants (they are all horrid, believe me), the behavioural variant is the one to watch out for.
Poor judgement and naivety are often the first signs that 'something is wrong', and a predator's dream. We have often seen vultures swoop in and seize assets in the early stages of this horrid dementia (public trustee no exception), the individual afflicted with FTD often trusting and oblivious of so-called new friends taking advantage of them. It is not unusual to see family fortunes lost quickly whether via the victim's newfound love of gambling, serious financial mismanagement, or worse, a shotgun wedding to a stranger(common if the FTD victim is financially secure).
In my case, our loved one was about to hand over the house titles to 'reacquainted friends'. A trusted lawyer of 35 years was sacked and a 'new' lawyer was inserted by these so-called family friends, who suddenly appeared out of nowhere and reinserted themselves into our loved one's life, attempting to transfer real estate into their name(during a tribunal hearing no less).
Behavioural changes are often slow and an insidious part of FTD....creeping up on families oblivious to the subtle changes in personality and odd behaviours, and is often the most distressing aspect of this degenerative disorder. Changes in personality can take decades to rear their ugly head, changes commencing as early as one's 30s (known as Younger Onset Dementia).
Now before diagnosing Aunt May with dementia because she handed over $20 to nieces over Christmas, one needs to understand that Judgement, or lack of, is the first sign that something is or may be amiss. Many with FTD are only too happy to sign away their life savings to a stranger, yet distrust close family members. It is odd that way.
Often in the early stages, FTD is misdiagnosed as bipolar, schizophrenia, or other mental health disorders.
It is vital a Neuropsychiatrist experienced in FTD, is sort early on. Sadly, Australia is behind the eight ball when it comes to exotic and unknown dementias and only a handful of dedicated specialists can be found who specialise in FTD. Testing often focuses in areas such as memory loss and orientation rather than executive functioning . It is not unusual for an individual diagnosed with FTD to 'pass" a mini-mental test and other clinical neuropsychological tests. Many appear, look and act, superficial, quite fine.
Often many even pass executive functioning tests as well. Sadly, personality changes and poor judgement cannot be ascertained by adding up 1 + 1 or drawing a clock. Nor are long-standing eccentric behaviours FTD. Hence the need for a formal psychiatric evaluation by an expert in the FTD field, as well as a neurological assessment.
Family and carer input is vital in diagnosing FTD and their information essential. A decent specialist will often ask loved ones about the person's past behaviours and core values, and compare these values to the 'new' changes in personality. Carers are often ignored by medical professionals and not believed when they tell the Doctor "that's not my Dad/Mum".
The carer's input is vital in an FTD diagnosis. They should never be ignored!
Sociopathy is also often part of this cruel disease. We have heard in AASGAA many a case where a loving respectable parent has suddenly turned into a kleptomaniac or a sex fiend. The once-conservative father now visits brothels or the mother pole dances at family functions. In one case, a sibling decided, at a family gathering, to run down the street stripping off their clothes, screaming and laughing, the family watching powerless and in horror.
In other cases, family members have been abused, spat at or accused of stealing, by their loved ones lacking insight into their decline.
The flip side of the emotional outbursts is apathy: your loved one sitting hours on end staring at the wall, refusing to do anything. This is very common. Symptoms often change like the wind also. Manic behaviour one day, followed by a new symptom the next.
This disease is about judgement, poor planning, executive dysfunction, and reasoning. Or lack of reasoning. Good luck trying to reason with a physically able person, with FTD. The lack of reasoning is a challenge for all involved in caring for an FTD patient/loved one.
What we hear often:
"This is not the person I married"
"This is not my parent"
We are talking about a complete personality change in your loved one. Inflexible, stubborn, temperamental rigid, apathetic, and the inability to reason.
Possibly the harshest aspect of this disease is watching the soul of your loved one evaporate right before your eyes. Human qualities such as empathy, compassion, and affection all dissipate rather rapidly, and this 'new unrecognisable person' slowly morphs and takes over the soul of your loved one. We have seen beautiful souls turn into snappy, angry, and judgemental people, lacking the ability to love or even express it.
Lack of empathy is the harshest aspect of this disease and the hardest for partners to accept. They often turn on their loved ones and carers. Be kind to carers. It's a tough job. Divorce is not uncommon, families are torn apart, and stress is at an all-time high. It is not unusual for a person diagnosed with FTD to be placed into aged care early just after a diagnosis.
Carer burnout is quite common. Many walk away from loved ones and the person with FTD often ends up homeless. FTD and homelessness go hand in hand. A large percentage of our homeless have frontal lobe damage/dementia.
Guardianship and administration are essential and estate planning is a must. Given the vulnerability of the person, financial administration, guardianship, and/or powers of attorney must be enacted as soon as a diagnosis is made.
Protect the vulnerable person from predators changing legal documents (such as wills, transferring of property). Question any legal documents changed before the diagnosis. Medical decisions will need to be made urgently and be aware, and the person with FTD often lacks insight into their condition.
Challenging behaviours are common. Do not be surprised: your loved one will fight you until their last breath!
Also, be aware that the public guardians and public trustees in Australia often used symptoms of FTD to remove family from caring for loved ones with FTD. The challenging symptoms are often used as a 'right and wish'. FTD and challenging behaviours are not a reason to revoke Powers of Attorney in place, nor an excuse for the State to take control of decision-making rights.
AFTD an American organisation specifically deals with FTD and has listed all the changes carers need to be aware of. Read up and learn what you can. Surround yourself with people who will not judge you and are aware of this awful diagnosis.
Remember, you will survive.
Christine Dalas
AASGAA
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Know the Signs…Know the Symptoms
The following are possible symptoms of bvFTD:
Disinhibition
A loss or lack of restraint based on social norms leads to inappropriate behavior and impulsivity. Behaviors may include:
Making uncharacteristic rude or offensive comments
Ignoring other people’s personal space
Shoplifting, reckless spending
Touching strangers or inappropriate sexual behavior
Aggressive outbursts
Apathy
Indifference or lack of interest in previously meaningful activities. Behaviors may include:
Loss of interest in work, hobbies, and personal relationships
Neglect of personal hygiene
Loss of initiative
Emotional Blunting
Loss of warmth, empathy, or concern for others. Behaviors may include:
Indifference to important events (e.g., death of a family member or friend);
Failure to recognize that loved ones are upset or unhappy
Compulsive or Ritualistic Behaviors
Single behaviors or routines that are performed over and over. These may include:
Repeating words or phrases
Hand rubbing, clapping
Re-reading the same book over and over again
Hoarding
Walking to the same place at the same time every day
Changes in Eating Habits or Diet
Excessive, compulsive, or inappropriate eating & drinking, or other pronounced changes in dietary preferences.
Binge eating
Carbohydrate craving
Eating only specific foods
Increased or first-time use of tobacco products
Hyperorality
Excessive water or alcohol consumption
Attempting to consume inedible objects
Deficits in Executive Function
Poor decision-making, judgment, problem-solving, and organizational skills. Examples include:
Difficulty planning the day’s activities
Questionable financial decisions
On-the-job mistakes that may be uncharacteristic
Other Symptoms
Agitation, emotional instability. These may be conveyed through:
Pacing
Frequent and abrupt mood changes
Lack of insight
As noted above, failure to recognize changes in behavior or exhibit awareness of the effects of behavior on others. Behaviors may include:
Blaming others for consequences of socially unacceptable behavior; e.g., job loss
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