Kudos to the Dutch team that is raising awareness about how pain and agitation are seldom relieved in the last week of a patient’s life. See comments by Drs. Jenny van der Steen and Shega in Neurology Today. Beware of pain medications appearing on the nursing list to be given only “as needed” or prn; if the patient doesn’t ask for it, s/he doesn’t get it, and what patient at that stage of illness can ask?
This article is part of a growing movement to acknowledge that most of what we do after making a diagnosis of dementia is palliative, that is, meant to enhance quality of life where there is no cure. I am hoping that we can destigmatize the word “palliative” over time.
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.
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.
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.
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.
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.
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.
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.
A good friend of the Dutton family (pictured below) wrote a letter to Inside Halton about Ian Dutton’s contribution to the community. The editors added commentary to beef up advocacy to our politicians re a plan for dementia care: http://www.insidehalton.com/opinion-story/4578210-remembering-ian-with-forget-me-nots/
The teen caregiver website is available in French.
And Dr. Robert Laforce at Universite Laval has developed these informational brochures: