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Early Onset Dementia Alberta: EODA.CA

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Doreen and Dean - My wife Doreen was 54 years old when I realized 'something wasn't right' with her cognitive state. Because she was under the age of 65, we were unable to obtain the services of a gerontologist. We did have access to AHS Mental Health Outreach Clinic in Red Deer but they also were unable to help us. After many years we eventually did get a GP onside and even with his influence, it took us 16 months to see the gerontologist. At that time, Doreen was 61 years of age and the symptoms of the disease had advanced to such a level that his exact words were "Your wife has Alzheimer's disease, do not come back and see me". Early Onset Dementia is a disease that, in most circumstances, advances extremely fast. With the stress that it put on me as the primary caregiver, I had a heart attack and other health issues. I honestly believe that my wife's quality of life was significantly less than it would have been, had we access to 'the system' in the earlier stages of the disease. Doreen passed away last year at age 66. I miss her. Her Grandchildren miss her.

Issues: Diagnosis, medical services and appropriate programs, appropriate care facilities.

Lawrence and Karen – Lawrence was diagnosed of Early Onset Alzheimers in April 2011 at the age 63 after going downstairs to hang himself. He knew there was a problem. I first had concerns in 2005 and Lawrence did go to the doctor to be assessed for Alzheimers disease. Although his test scores were very low, he was told “not to worry, there are no concerns with your memory”. At my insistence, he was referred to a few neurologists and the reply was that he would not be seen because he was too young, he needed to be 70 or more. Lawrence was still suicidal. He was placed in Red Deer Psychiatric ward several times and referred to Foothills Medical Centre where the diagnosis was made. In February 2011, through a referral by the Red Deer Hospital to our local Health Care Unit, Laurence was diagnosed with Early Onset Alzheimers. After this visit and many more phone calls, it was finally decided in February 2012 that I required relief. I was initially provided 3 hours every Tuesday and then expanded to another 2 hours on Thursday mornings in the fall of 2012. I also pushed and was able to have Lawrence, referred and enrolled, in the Adult Day Program in Red Deer on Fridays from the summer of 2012. He was suicidal, paranoid and only slept 4 hours a night. When my health declined the Health Care Unit rightly decided it was a crisis situation and Lawrence was placed in Northcott, Ponoka. One hour away. He was there four months, finally coming to Sunset Manor in Innisfail in August. They were not equipped to look after him as he was up most nights walking and confrontational. Most of their clients and Northcott’s were in wheelchairs and much older than Lawrence. He was removed from there twice, being placed finally in Centennial Mental Health and Brain Injury Center in Ponoka in December 2013 where he is now.

Issues: Difficulty in obtaining a diagnosis, being referred to several medical facilities, the inability to find appropriate placement and limited home care support compounded the already emotional, stressful road we were on.

MarkShirlianneMark and Shirlianne- My name is Shirlianne and in 2010 and I was diagnosed with Early Onset Alzheimer's disease at the age of 48. My husband Mark and I shared many great years together and enjoyed many wonderful friends and experiences travelling around the world. In 2008 I was forced to leave my job because I was making financial errors that I had never made before. It seemed like my cognitive abilities were failing me. We suspected Alzheimers disease, but the numerous doctor’s appointments always resulted in the same answer: "No, Shirlianne is too young to have Alzheimer's disease. It’s just depression". It wasn’t until 2 years later that I received my diagnosis. My cognitive ability was steadily decreasing in 2011 and by 2012, I was experiencing the first of my delusions. In May, 2012 I had the first of 10 visits from a psychiatric nurse. This experience was of little help to us as there was no sharing of information. This lack of communication from mental health professionals extended to some of the doctors we dealt with as well. My delusions were worsening and causing me a great deal of anxiety and fear. At this point I am receiving 4 hours of home care and my husband is working up to 12 hours a day. My fears and anxiety are escalating to such a level that Mark contacts the psychiatric nurse who is unable to reach the doctor in charge. He is told to take me to an emergency room where I am given sedatives and sent home. My symptoms are worsening and Mark asks for more home care support. The case manager authorizes an increase to 6 hours a day and states that it is breaking her budget and that there will be no more increasing of home care hours. In February 2013 I leave the house on my own and get lost. Mark was advised to put me in care at a cost of $1,756, plus medication cost of up to $600 each month. I am placed in an assisted living facility and rapidly deteriorate. I lose my sense of boundaries and as a result am punched, slapped and pushed. The staff don’t know what to do with me and keep calling Mark for a solution. By September 2013, I am pacing up and down hall ways for 42 and 46 hours at a time, refusing to eat and losing massive amounts of weight. Mark and I meet the fourth social worker to be assigned to us, who openly admitted that she knows very little about Alzheimers disease. She later called Mark to say that he had to do something about me as I was a real problem. In October, I am attacked by another resident and am put under supervision. The next month I take a piece of toast from another resident’s plate and am punched in the nose …suffered a bloody nose and two black eyes. As a result of this incident, and others like it, the decision is made to send me to Villa Caritas. In late November 2013 I am placed at the highest level of psyche care in Edmonton and am still there till today. Because of my boundary issues, I continue to be hit, scratched, and bitten by the other residents. I have lost the ability to communicate and should be placed into complex care because of my needs. Unfortunately, we have been told that there are no beds available. As they need to free up beds at Villa Caritas, I may be placed in long term care which according to the doctor is insufficient for my current needs. This is my life with Early Onset Alzheimer’s disease and I am only 52 years old.

The following is a statement from my husband Mark. “Due to my wife’s vulnerability to other residents, and her declining physical, mental, and speech issues, long term care is not an option as far as I’m concerned, and I will do everything in my power to prevent Shirlianne’s care being compromised by the inability of the system to deal with her needs.

Issues: Appropriate programs and care facilities for our young population diagnosed with dementias. Diagnosis; medical services & education within medical community.

Ken and LoriKen and Lori – Ken was born in Sydney, NS, had an easy going nature, was known for his trademark Cape Breton wit and charisma. He received scholarships that enabled him to get his degree in Architecture in 1974. In 2006, Ken’s passionate 22-year career ended abruptly when he was diagnosed with Early Onset Dementia. He was 57 years old, we had 3 children aged 16, 18 and 20 and our young family was in shock. The increasing emotional and financial stress was making life very difficult. As Ken’s illness caused him to become more isolated from friends and mainstream society, we were unable to find government day programing to accommodate his young age and needs. He spent his days alone pursuing his hobby of photograph. In February 2014, he began to experience delusions, extreme anxiety and was losing his ability to speak coherently. Although Ken had been assessed for placement in January, he was now considered ‘medically unstable’ and I was told that he could not be placed. As my husband’s illness was beyond what I could cope with by myself at home, our family had no other choice but to take Ken to the emergency ward. During the ER process my husband’s anxiety escalated, he was given extremely large and rapidly increased doses of anti-psychotic medication, developed Neuroleptic Malignant Syndrome (NMS) and passed away in hospital 6 days later of cardio pulmonary failure. Once again, our young family was in disbelief and shock.

Issues: Home care services; assessment for placement; change in ER protocol when dealing with dementia patients

ClarenceBernieClarence and Bernie - In 2011, at the age 61, Clarence was diagnosed with Early Onset Dementia. He faces issues such as anger, memory, focus, problem solving skills and verbal filter systems. Clarence is no longer able to work, drive, demonstrate financial awareness, make appropriate decisions and maintain relationships. As Early Onset Dementia is not recognized by the Alberta Health Care system, this limits access to medical professionals, potential services, and education for physicians and caregivers. Due to a minimum age of 65 before the recognition of Dementia, those suffering with Early Onset Dementia and their partners experience extreme challenges. Even professionals such as psychologists, case managers and doctors are unaware of this diagnosis or the implications for patients and caregivers. The recognition of Early Onset Dementia, and education for physicians and caseworkers is of paramount importance. Assistance is needed setting up and maintaining private homes to ensure safety measures are met throughout the progression of dementia while allowing persons to remain at home as long as possible. There is an urgent need for Day Programs and designated Long Term Care placements to allow partners to continue working to sustain a standard of living in the present and future. Early Onset Dementia is extremely isolating for all involved and the stigma associated with mental health impacts day to day living.

Issues: Diagnosis, medical services and appropriate programs, appropriate care facilities.

Fred and SandraFred and Sandra - In 2011, at 56 years of age, my husband Fred was offered a package ending his career with AHS. Shortly thereafter he was formally diagnosed with Early Onset Dementia; he is now 59 years old. Prior to diagnosis, he was physically fit, active and athletic; he enjoyed walking, hiking, cycling, golf, skiing, gardening, shopping and cooking but is no longer able to do any of these things independently. He needs cues, reminders, supervision, support and assistance due to poor short term memory, orientation, problem solving, judgement and initiative. Our retirement was not the realization of the hopes and dreams we had for this period of our lives. I find myself without the life partner, the man I married so very many years ago. I am his full time caretaker as there are insufficient services for people at a young age with this relentlessly progressive and ultimately terminal condition. I am his sole support (friends, even family, do not usually stick around to help). There are few home care/day program options and what does exist is simply not suitable as they are geared to an elderly population. The path for older people with Dementia is quite different from young onset. Where will he, this physically heathy, fit and active man, live when his care needs exceed what can be provided in the family home? Again, the current option is long term care alongside the many frail elderly, often with numerous medical and mobility issues. Our grass roots group seeks input from our government on how this issues will be addressed. Issues: Appropriate programs and care facilities for our young population diagnosed with dementias.

UPDATE (March 2016): Fred attends a day program two days a week which provides a break for Sandra.

My wife Shirley was diagnosed with Alzheimer's at age 54, but she probably had it for 5 years before that, and hasn't worked since age 52 due to the disease. A diagnosis took 2 years, and during this time not knowing what was wrong greatly added to the challenges.

Many of those with Alzheimer's dementia (AD), before diagnosis, have no idea what is happening to them and try as they might, end up quitting their job, are shuffled out by being asked to resign or worse yet being laid off (in other words FIRED) by their employer with no thought of accommodating their disability, which I believe is a legal obligation for the employer.

Her undiagnosed AD and this situation put tremendous strain on our marriage, the quiet moments sharing our life together were gone, and it's pretty well the same for all who are affected by early onset AD.

In a strange twist, I have a difficult time remembering my wife as the person I married and the hopes and aspirations we had for our life together are mine alone, with no way to make them happen. Her memories are gone. It is often said those with AD die twice. I now know what that means.

Our kids have been great in dealing with this, and do their share of providing support and care. They have their own lives working hard to achieve a happy successful life; a nurse, a teacher, and a construction contractor. They have lost a parent, guidance counsellor, supporter and staunch cheerleader, and on top of that they have to look after a parent far too early. And the burning question is, will they succumb to the same fate?

Without a timely diagnosis and support, many couples sadly end up in separation or divorce. The untold costs are huge, not only in the lost productivity of both the one with AD, but with the spouse who is under a significant amount of long term stress without adequate support. Finding better treatments and a cure is indeed a priority, and that needs more resources to make it happen.

The diagnosis of AD wreaks havoc on even younger families with children still attending school, which makes the situation much more complex than those who experience late onset AD in their 70's and 80's. Caregivers are still working and it's a huge challenge to be a caregiver, care coordinator and breadwinner at the same time.

Sadly we had to move Shirley to a care facility as she could no longer remember to eat, turn on the TV or feed the cat. Not only can't she remember when to do these tasks, she no longer knows how to do them.

Shirley is the youngest resident in the assisted living facility by far. Those with early onset (under 65) are still active, physically well, and need social interaction. Many of the residents where Shirley lives are in wheelchairs, haven't the ability to socially interact, and require a much higher level of care than those with early onset AD.

The amazing thing is she can carry on a very engaging conversation for several minutes with a stranger before it becomes apparent she has a problem. There is very little opportunity for this simple interaction in her current care situation.

Shirley constantly walks the hallways to get some exercise and attempts, with the help and blessing of the staff, to create some activity with the other residents, many who are old enough to be her parents. I can't say enough about the staff, who try to do what they can for everyone, but unfortunately it's often the lowest common denominator that rules the day. For example, music time is filled with songs from the 40's and 50's most of which were popular BEFORE she was born!

The answer is to create a care facility in Calgary where all the residents are in there 50's and 60's to create a meaningful life experience for the early onset group for the short time they have left. And this is not difficult to accomplish, all the early onsets affected in care homes today are scattered throughout the system. All that is needed is to move them together into one central facility. No added costs.

While Alberta leads the country, and in some cases the world, in many areas, it's almost embarrassing that once productive Albertans are not afforded an appropriate and meaningful level of care and support.

Please find a way to make this happen. Thanks.

Brenda and Gord2Gord was diagnosed with A-typical EOD at the age of 57.  My husband was in great physical shape, had enjoyed a successful career in sales, and was a father and grandfather.  Before our diagnosis we changed up our lives to accommodate his anxiety and depression.  He repeatedly passed memory tests with our physician until we paid to have cognitive testing done and were told his deficiencies were great. 
We were both self-employed and although we had saved for our retirement we were not prepared for one income and the increase in our living expenses.  I took a full time position at 60 to afford the cost of long term care for Gord. Placement was based on availability, with no regard to our personal situation.  I worked full-time, he was in NW Calgary, we lived in SW Calgary. Exhaustion and hypertension was my new normal.
Gord died September 22, 2013, he was 64.  He wanted to die.  The facility he had been placed in was very old, the smell was revolting, there was no access to fresh air and he was at least 15 years younger than most of the patients.  We did everything we could to get him moved to a different facility. This proud man was living completely without dignity, missing his family and his life, trying so hard to always be the best he could be. Heartbreaking for all of our family.
There are many compassionate and kind people working within AHS.  I felt so often their sympathy to our situation and our age.  But there were always waiting lists – for day programs and for care. The system and the employees of AHS simply do not have the resources to support those living with Early On-set Alzheimers or their families and partners. 
Critical Issues: Education, Early Diagnosis, Research, Age Appropriate Day Programs and Long Term Care Facilities.


 Barb BainRick, my husband of 32 years, abruptly ended his successful 25 year career in June of 2010. He was diagnosed 2 years later (Jan 2012) with Posterior Cortical Atrophy, an atypical variant of Alzheimer’s, at age of 57.  I was working part-time, but retired this year to be at home with Rick. I was worrying more and more while at work, with him on his own at home.  I’m his full-time caregiver now. Over the past couple of years we have accessed government assistance and important supports, but one cannot access any help without an actual diagnosis. The Primary Care system needs to have more awareness regarding younger onset Alzheimer’s, and wait times for neuropsychology testing need to be improved.  Our “retirement nest egg” has been largely depleted to pay off our debts and our bills. My hope is that Rick can live at home, where he is happiest, for as long as possible. I know that long term care is inevitable, but at this time, there doesn’t exist an appropriate care facility catering to younger people with dementia, and I worry about how we could afford it. Rick attends a pilot Younger Onset Adult Day Program two days a week. This has proven to be a godsend. The programming continues to improve, and the break for me is crucial.  There are people who attend whose spouses are working full-time, so this is something that is desperately needed on a full-time, five days a week basis, for them. This disease has changed both of our lives completely.

Update March 19/16

Rick was admitted into a Supportive Living Dementia unit in January of 2016. The transition is ongoing. At this point I am still doing a lot of caregiving. My biggest concern is our financial burden. I am worried about how I will survive in the near future when our savings are gone. I am now severely depressed and still struggling to care for my husband and myself.

 Michael and Nicole2Michael and Nicole – In 2012, at the age of 48, my husband Michael was diagnosed with Early Onset Alzheimer’s disease. We have been married for 20 years and have 5 children aged 15, 13, 12, 8 and 6. Not knowing what was going on, we lived in hell for 5 years before he was diagnosed. Mike had Issues with his job, relationships, coping, reasoning & memory. It took 9 months to get into see a neurologist and 10 months for a firm diagnosis. Looking back on that time, I still try to remember even a bit of what he was like ….as a husband and father.  My biggest struggle right now is the fact that there are some supports for Mike, but there are no supports for me. When Mike and I decided to have 5 kids it was with the intent that there would be 2 adults to share the load, but now EVERYTHING falls to me and I’m drowning.   I need a meal prepared, the laundry done, floor & bathrooms cleaned, someone to grab milk or few groceries, what about a taxi service to drive one of my children somewhere …Mike can’t drive anymore. I could use a Mr. Fix It once a month, just all the things I lost when he was diagnosed. I work full time to support this family which adds to the already large amount of stress I am feeling.  I’m tired, no let me rephrase that, I’m exhausted and my mom and mother in law are already burnt out too.

UPDATE (March 2016): Michael moved into a care facility (age 52) last fall. Nicole is still working full time, and the family is attending counselling.

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