UK-Based Early Onset Dementia Online Resource

In the UK, they call it Young Onset Dementia (YOD), as opposed to Early-Onset Dementia. Here’s a link to their information and support. Includes personal stories, blogs and poetry written by patients and their carers, plus links to relevant publications and other useful websites.

Editorial comment: this is the first site I’ve seen that has video content and invites patients to share from their own experiences, although I do know the Alzheimer Society in Canada has created in-person support groups for patients with mild stages of early- and late-onset dementia.

Dementia Awareness and Care in the UK

Thanks to Betsan Juckes-Hughes of Wales for calling these two programs to my attention:
1. Purple Angels: not unlike the breast cancer insignia concept. Shopkeepers can post a purple angel to indicate both their awareness that those with cognitive impairment might need a little extra help or time and their willingness to reach out.
2. Butterfly Scheme: includes a certification program for hospitals to increase skills in working with patients who have dementia

I had written earlier, “Would love to see something like this arise in Canada. Sometimes corporate branding keeps us from letting the effort spread community-wide,” but I was behind the times! There is a Canadian Purple Angels outfit. Ken Wong is seeing about becoming a Canadian ambassador.

Wandering: Unfortunately Unpredictable

On the occasion of a tragic end to a wandering patient’s life, I would like to re-broadcast what I learned from Dr. Meredith Rowe, a professor at the University of South Florida College of Nursing.

One of the main take-home points is that it is rarely or never the caregiver’s fault that the patient gets lost.

  • The people who get really lost were actually off doing a regularly successful independent activity! The usual walk to the post office that had gone well every time before got pre-empted or interrupted, and that disrupts orientation. It could be something as benign as a stranger stopping the patient to ask for directions.
  • No unusual events or behaviours precede. This is another way of saying that the caregiver did not incite the wandering. Insomnia or an argument with the caregiver may happen, but neither of these has been significantly linked to the patient getting lost.
  • Patients are usually found less than a mile away, hiding. They realize at some point that they are lost and then feel unsafe, therefore they hide. This is the part that makes it harder to find them. They may not answer to unfamiliar voices calling out their names. Look under leaves, behind bushes, in closets or cabinets. It might take a human dragnet.

For more, please see Baycrest colleague Renee Climan’s blog and Dr. Rowe’s website.


June 2014 Update on the Efficacy of Non-Pharmacologic Interventions for Agitation in Dementia

Livingston et al. have created a slightly daunting 256-page systematic review of the latest evidence to support interventions like light or aromatherapy for agitated patients with dementia. They have brought the scientific inquiry to a higher level by stratifying the results of the interventions by the severity of the agitation. This level of specificity hasn’t been investigated before across interventions. Unfortunately, there haven’t been enough trials published for them to use quantitative analysis except on light therapy (bright lights to reduce sun-downing or confusion). But they try to compensate for this by performing a qualitative analysis to report on the efficacy of the other types of interventions available. Of interest, whereas aromatherapy and light therapy were at one time the interventions that tested well, time has told on these results: aromatherapy and light therapy will not work (as caregivers I’m sure could avow) on patients with severe agitation.

Training staff at facilities to provide adapted activities or to try client-centred approaches was more effective than training family members to use a psychological approach to severe agitation at home. I think this report, among other things, is an important reminder to informal or family caregivers that you need to share responsibility for care with professionals. At a certain point in the illness, others may be able to provide more help to the patient (and therefore you) than you can.

Although music therapy has become very popularized recently, it looks like it is NOT a fix for those with severe agitation (may be better for those quiet, seemingly locked in folks).

I was surprised to see that moving patients into home-like care does NOT reduce agitation and may actually increase it. It counters my generalized expectation that having fewer variables (fewer co-residents, smaller space, more continuity of staffing) would help; perhaps (and this is me speaking, not the authors of the review) being in a home-like setting further confuses the agitated patient because it seems like a home but isn’t at all familiar as the patient’s former residence…

Only mixed results using pet therapy – again, this is about treatment of agitation, as opposed to treatment of anxiety or depression or loneliness, for which pet therapy may be just the ticket.

Do at least give page xvii a look – it’s the Plain English [sic] Summary.

for Canadian Snowbird Families?

The Rices have been wintering in Florida for decades. Eric found Maria’s Adult Day Care Center a perfect way to continue his wife’s involvement in supervised activities while they were away from home. I haven’t been there myself, but the literature and calendar of events he brought back looked like they’re hitting all the right buttons, in terms of staffing and the range of activities and amenities available.

Thanks, Eric, for your due diligence!
If others have similar recommendations, feel free to Comment Below about them.

Tau Imaging Has Come for Alzheimer’s disease but not FTD

In a recent issue of Brain (volume 137, pp 1570-1571) Dr. Bill Jagust of UC Davis reviews the history of PET imaging to identify proteinopathy loads in dementia. You may have heard some news about being able to image and quantify tau in the human brain this year– not nearly as many people have been through this procedure as they have with amyloid imaging thus far. All the same, it looks like the tau problem (tauopathy) that occurs in Alzheimer’s disease (AD) can be identified well by an agent called THK5105.

However, THK5105’s precursor, THK523, was not useful to identify the tauopathy that occurs in variations of FTD, so it will still take some time to see that come online. The tauopathy seems, at a glance to be similar in both AD and forms of FTD in that the ratio of 4-repeat tau to 3-repeat tau is elevated in both, but the way that ratio is upset differs between AD and the FTDs. In AD, there isn’t as much 3-repeat tau available; in FTDs, the 4-repeat tau is overabundant.

Let the FDA Hear from You!

The Association for Frontotemporal Degeneration has posted a 2 question FTD impact survey on their website. They are recruiting patients, primary & former caregivers and family members to complete the survey to provide some data support the topic of FTD to be one of the public meetings in 2016 for the FDA’s program – Patient Focused Drug Development.


These public meetings allow FDA reviewers to learn about underserved disease areas based on the patient experience and use this content to inform on their reviews of new drugs, but also to assist in developing/evaluating outcome measures – particularly helpful for diseases with no current meds or drugs do not adequately manage the patient’s experience. Pls add your voice.

We Need Advocacy Re Capacity Disputes

Here is an ongoing situation where no one but the lawyer suggested to the patient by Legal Aid believes the patient is capable of making his own healthcare decisions. Unfortunately, the legal system risks conflict of interest in cases such as these. Below is an exceptionally clear letter provided by the patient’s daughter. I am sorry to report that she has heard from none of the addressees yet. I have extracted personal identifiers.

I’m hoping this can lead to at least some educational outreach for Legal Aid. Maybe that’s a reasonable place to start? Alzheimer’s Society, what say you?

May 23, 2014

Lieutenant Governor in Council, The Honourable David C. Onley
Ontario Ombudsman, Andre Marin
Minister of Health & Long-Term Care, Deb Matthews
Ministry of Health & Long-Term Care, Legal Services Director, Janice Crawford
Ministry of the Attorney General, Madeleine Meilleur
Psychiatric Patient Advocate Office, Susan Picarello
Medical Officer of Health for Ontario, Dr. Arlene King
Dr. Marc Gabel, Council President, The College of Physicians and Surgeons of Ontario
Ontario Long-Term Care Association

Re: Outcome – Consent and Capacity Board Hearing for [patient], May 6, 2014
I am writing to you to request your assistance to require the Consent and Capacity Board of Ontario “CCB” to order a new Capacity Assessment for my father, [patient]. Although he was found capable on May 6, 2014 by the Board, I can assure you that his condition, Progressive Supranuclear Palsy, has rendered him incapable of caring for himself. Outlined below is a brief synopsis of the recent history associated with a man that has been stricken with a debilitating disease and a family that now finds themselves helpless to provide care to him all thanks to the Consent and Capacity Board of Ontario.

In October 2013, Dr. Tiffany Chow, Associate Professor of Neurology and Geriatric Psychiatry at the University of Toronto, and Senior Clinician-Scientist at Baycrest Health Sciences diagnosed my ailing father with Progressive Supranuclear Palsy. Progressive Supranuclear Palsy (PSP) is a rare brain disorder that causes serious and progressive problems with control of gait and balance, along with complex eye movement and thinking problems. One of the classic signs of the disease is an inability to aim the eyes properly, which occurs because of lesions in the area of the brain that coordinates eye movements. Affected individuals often show alterations of mood and behaviour, including depression and apathy as well as progressive mild dementia. The disorder’s long name indicates that the disease begins slowly and continues to get worse (progressive), and causes weakness (palsy) by damaging certain parts of the brain above pea-sized structures called nuclei that control eye movements (supranuclear).
After a crisis scenario in the family home in October 2013, my father was formed and institutionalized at the Bluewater Health Care facility in Sarnia, Ontario. In January 2014, almost three months later, he was relocated from the Psychiatric Unit to the Cognitive Care Unit of the hospital. The resident CCAC registered nurse completed a capacity test in mid January and my father was deemed once again to be incapable. Initially, he was assessed as incapable by the Toronto CCAC in September 2013. He was placed in a nursing home by our family in late January 2014.

Although caring for an ill family member has been extremely challenging for our family, the doctors and nurses at Baycrest and Bluewater have been supportive and helpful in advising us and helping us to make the appropriate decisions for my father’s required ongoing care. It is obvious to those who meet my dad that he is not well. His blank expressions, the gaze of someone not completely engaged in his environment and his lack of mobility and falls are telling signs. I suppose his mumbled speech is the reason that his lawyer, appointed by Legal Aid, did not allow him to speak at his own hearing. He has always been a kind and loving man but his illness now makes him aggressive and easily agitated. He suffers from symptoms associated with paranoia as well. It has been a long and sad road for our family but we have come to terms with his disease and have accepted his need for 24/7 care. He has not. He is in denial, and although we continue to explain his disease to him, he informs others that he has a bad foot and that he will be going home soon.

On May 6, 2014, the Consent and Capacity Board of Ontario determined that due to a “lack of meticulous note taking” by the CCAC Capacity Assessment Nurse, the finding of incapable was not sufficient and not being upheld. In a matter of a few short hours, at a hearing of 8 individuals, only one being from the medical community (the Blue Water CCAC Capacity Assessment Nurse  that rendered the finding of incapable in January) all the medical assessments, treatments and diagnosis were eliminated by a lawyer. There was no finding or request for a further capacity assessment or the call for a new medical opinion. The Consent and Capacity Board has since issued their finding, however, not to our family but to my ailing father, and now after 7 months of 24/7 care he is free to walk (with his walker I suppose) out the door of his locked down nursing home facility and into the community.

The members of the Board, particularly the chair,  treated my family members with nothing but disrespect and rudeness. Although outlined on the Consent and Capacity Board website, family members, spouses and children, are deemed to be parties to a hearing, we were not even acknowledged. My mother is the named Power of Attorney and she was never even notified of the hearing by anyone on the Board and nor has she received notification of the results from anyone. The CCB Code of Conduct, available on their website, was certainly not well represented in this matter. I even question if the Board representation met the established requirements for a hearing. There was no psychiatrist named and two members of the public were, during the Board introductions. To date, we have been unsuccessful in obtaining a copy of the hearing decision; therefore, we can not be sure if the Board representation met the requirements. I am a public servant, and I am disgusted by the behaviour of the Chair of the Board.

Our family is sickened by the thought of what might happen to my dad now. Nobody in our family has the ability to provide the care that he requires. We have long struggled with accepting his condition and we thought we had taken all the necessary steps to place him in an excellent facility that could provide for his needs. Our family is in disbelief. We want to understand:

  • How did this happen without the request of new capacity assessment by the CCB?
  • What will become of my dad?
  • How will he get the care he needs since nobody has requested any community care assistance on his behalf?
  • Why did a lawyer with no understanding of my father’s condition decide his fate?
  • Since when does the legal community over rule the medical community, without being fully represented, and when did the decisions of a loving and caring family become irrelevant?
  • Will the Consent and Capacity Board of Ontario be held responsible for what might happen to my dad or for his interactions in the community? After all, they determined his capacity without ANY current medical information?

By virtue of the name of his disease anyone could recognize that in five months my dad’s illness has progressed. As a family we have reached out to every professional body we can think of to assist us in caring for my dad. My mom has talked to CCAC, the Bluewater and Baycrest Social Workers, the nursing home owner, staff and doctor, and so on. We feel as though we have come to dead end and that nobody can help us. We don’t want my father to experience another crisis situation and another trip to the psychiatric ward at the hospital; these things are not good for him in his condition. I am now appealing to you for your assistance. It seems that there is a definite flaw in the mandate and/or legislation associated with the Consent and Capacity Board of Ontario. I am proud to live in a country that upholds the rights of its citizens but my father’s situation is a prime example of how something that is intended to protect us has gone very wrong.

I look forward to your timely response. Please free to contact me at [phone number] if you have any questions.