donderdag 1 december 2016

Recognising Dementia

I came across this article today - published in Real Simple.  The article is about recognizing the signs of dementia and obviously comes at an opportune time as many of us will be celebrating Christmas with our older friends and relative.  Most importantly, the article points out that there is a need to have memory problems checked out by doctors because one-third of the time the cause is something other than dementia.


Plus - a link to the Aardman animation about Santa Claus having dementia from Alzheimer's Research UK.
Santa Gets Dementia



donderdag 18 augustus 2016

Carers: 3 Tips for Improving End of Life Care for Loved Ones



As a family caregiver you will eventually need to think about how you will care your loved one in their last months, weeks and days – and whether they will need to be moved to a hospital, a hospice or other care facility. After 15 years as an Aged Care Specialist Social Worker, I understand that most of us prefer that our family member spends their last chapter in a peaceful home-like setting surrounded by the people they love - but that many carers are not aware of what services are available to ensure that this can happen.

Barbara Moran’s article in the NY Times:  Not Just a Death, A System Failure (http://nyti.ms/2b39STK) is based on the four months she watched her mother slowly die from chronic liver failure.  Her mother spent four months in a hospital ICU before the decision to stop all active treatment was made and she was allowed to die.  Barbara Moran is the managing editor and senior science writer at Boston University: https://www.linkedin.com/in/barbara-moran-843b0a10





In Feb 2016, (the same month that Barbara Moran’s article was published), Jennifer L. Boen’s article: Health Sentinel: Lack of Knowledge about Palliative Care Limiting its Benefits to Patients, Hospitals (http://bit.ly/2b2XXYK) – was published on News-Sentinel.com. Boen writes about the benefits of palliative care, which can be started in conjunction with curative treatments, and continue to the person’s death, even if the person is admitted into a residential hospice setting. She also states that there is a lack of understanding about palliative care by health care professionals, resulting in too late or non-existent referrals for people who would benefit from it. Jennifer Boen is an award winning medical and social sciences writer:  https://www.linkedin.com/in/jenniferboen

Understanding the difference between palliative and hospice care ensures that you know what is appropriate at what stage in the care journey, and knowing that these services are available to help you care for your loved one as they reach the end of their life is a great start. Further by following these 3 steps you can ensure that the right help is in place to allow your family member the death that they desire and deserve


  • Communication and Planning:  talk to your loved one about what they want and ensure that their wishes are documented and discussed with all health professionals.
  • Research:  Research what palliative and hospice care services are available in your local area including admission process, wait-lists, costs and limitations of service.
  • Advocate:  Be the advocate for your family member by clearly communicating their needs, likes, dislikes, - to confirm that the service they receive is the perfect fit for who they are.

Although dying may be inevitable, careful planning and the right help can ensure that your loved one makes this final journey, pain-free and surrounded by the warmth of the people and things they treasure the most. 

(this post was written as part of an assessment for MOOC3 Social Media Marketing - a Coursera Northwestern University online course that I am currently enrolled in)
bit.ly/2bDLwEj






dinsdag 28 juni 2016

Medications - Part Two

I have some good news!  After a few weeks of family dysfunction and the delay this causes - my father has been taken off all medication, except medication needed for pain relief.  He is, as hoped, a slightly more responsive more often, less glassy-eyed, and more like himself in the brief periods when his brain is connecting the dots of his life.  It is the outcome I was hoping for: that Dad has the chance to be himself, to react to the people around him, to appreciate his surroundings.  Yes he is still in hospital awaiting a nursing home bed. Yes he still can't independently move his left arm or leg.  Yes, he still can't be independently relied upon to feed himself.  Actually he can't even reliably remember family members or hold a sensible conversation that lasts more than a few minutes.  Yet because he is no longer a zombie, sitting of lying in bed waiting out his days in a chemical haze - the quality of his life has improved, and family can enjoy seeing a smidgen of the man we know.

So how did this change take place?  Firstly I requested a list of my father's medications.  I googled each medication - including side effects and recommended dosage - on various websites including Drugs.com and came up with a list of concerns and questions.  For example: my father was on Risperidal/Risperidone which is an antipsychotic medication often given to people with severe schizophrenia and manic depression.  Below is a quote from the Risperidol page on Drugs.com:

Risperdal is not approved for use in psychotic conditions related to dementia. Risperidone may increase the risk of death in older adults with dementia-related conditions.

and more...

Stop using Risperdal and call your doctor at once if you have fever, stiff muscles, confusion, sweating, fast or uneven heartbeats, restless muscle movements in your face or neck, tremor (uncontrolled shaking), trouble swallowing, feeling light-headed, or fainting.

Although my father has an obvious dementia, his level of confusion increased while taking Risperidal. He required additional medications to treat his tremors and the restless muscle movements in his legs (often common in people who have had a stroke). Hence, my question was - does Dad really need to be on this medication.  Could his irritability be related to pain?  Could the Risperidal be adding to his confusion and tremors?

I am not anti-medication.  I love my pain relief, antibiotics, antihistamines, epidurals etc as much as the next person.  What I don't like to see is medications given to older people without looking at alternatives to treating symptoms like irritability, pain and depression - especially in people with a dementia.  
As a family member - you can advocate for your parent by asking whether medications are really essential, safe, and improving the person's quality of life.  Many of us are not comfortable questioning decisions made by doctors - but doctors are simply service providers doing a job.  
Do your own research, voice your concerns, ask questions about medications - and seek out alternatives if you feel your parent is lost in the blur caused by being over-medicated.


donderdag 26 mei 2016

How to Make a Zombie

Easy!  Take one old person confined to a hospital bed and pump him or her full of medication.

Often done in the name of medical treatment to prolong life – the implications for actual quality of life are frequently ignored. Yes, a tremor that sometimes can be seen in an otherwise paralysed leg may become less obvious with antispasmodic medications, BUT the person’s ability to clearly communicate with family members, or to express a desire to not eat mashed pumpkin, or a desire to die, may now have significantly deteriorated – reducing them to being immobile, staring vacantly and drooling saliva.  Just like a zombie.

This is what happened to my father after doctors added an antispasmodic medication to his daily handful of pills.

Fifteen weeks ago my father sustained a stroke.  He has been in hospital ever since.  The stroke has paralysed his left arm and leg – and left him confused to the point that he often forgets family members, where he is, and what has happened to him. 

Medication is a major part of his treatment.  He takes medication for pain, existing heart problems, aggression, depression,  - and now for myoclonus (involuntary spasms in his paralysed limb).  With the addition of each new medication he becomes less able to talk coherently and to follow directions. 

This situation has left me feeling angry and frustrated.  Three months ago, I handed copies of my father’s signed Advanced Care Directive to the treating health care team. In this document Dad specified his request to not receive any active treatment - should his health be seriously and permanently compromised by accident or illness.  Further my father has been a longtime supporter of euthanasia, wanting to have the choice to end his life should his health be seriously compromised.  

What is the point of having an Advanced Care Directive or a Living Will, if doctors ignore the contents of this legal document, made when by a mentally competent individual planning for their own future?  Why is prolonging life more important than the individual’s preference to not be kept alive confined to a chair or bed in a nursing home? Or to an artificial respirator?

My father is not going to recover.  He is waiting for a room in a high-care facility (nursing home) to be vacated by its previous resident.  For a man who loved lying in the sunshine listening to his favourite music, being stuck for endless weeks inside a health care facility is a desperate situation.

As his daughter I want to encourage doctors to stop all medications, except medications for pain, and let his body take a natural course of action. Follow his instructions even if it means that he will not live long enough to take up the bed in a nursing home. His wishes need to be paramount in making decisions about his health care.







dinsdag 10 mei 2016

Review on ACCESS website!

Today a review for my book was published on the ACCESS website.  Many thanks to Ute Limbacher-Riebold for your amazing review and recommendation!

http://access-nl.org/about-access/features/reviews/book-review-parental-guidance-long-distance-care-for-aging-parents.aspx

maandag 18 april 2016

Boredom + Frustration = Aggression + Depression


Today my father remains in hospital waiting for an available bed in a high care facility, or nursing home.  His stroke occurred more than two months ago.  Every day he continues to need help to complete most things he did independently prior to his stroke - like showering, dressing, getting to the bathroom, moving out of bed, eating and drinking.  Mostly he is still confused by his situation and surroundings.  Sometimes he recognises family, sometimes not.
The doctors have prescribed new medications to deal with the times when Dad was acting aggressive towards family and staff.  By aggressive, I mean refusing to eat or spitting back the food that was put in his mouth, being short in his verbal responses, not looking at people.  He also regularly vocalises his desire to die.  Hence, he now receives anti-psychotic and anti-depressant medications with his daily handful of pills.  He is unable to control his movements,  and now he isn't allowed to control his thoughts.
Crowd control in aged care facilities is rife.  By this I refer to the significant percentage of residents regularly given anti-psychotic and anti-depressant medications to keep them calm and less disruptive to other residents, staff and family members.  Depending on the study read, researchers estimate that up to one third of all residents are prescribed these medications.  Not only does the medication turn people into zombies (unable to express emotions at will), it further decreases their independence and increases the risk of falling.
My question is whether behavioural therapy is possibly a better option- then dulling older people into quietude with the use of these medications.  Taking the effort to find out what a person enjoyed prior to becoming incapacitated and reintroducing this into their daily life could improve mood and reduce irritation and frustration in people with cognitive problems (eg dementia). For example - listening to their favourite music on headphones; sitting in the sunshine; walking with a companion; having something to do with their hands (painting, folding, etc) - might all be things that make a difference. Expecting someone to sit or lie quietly still as they wait out their last days, months or years is unrealistic and somewhat cruel.  There are many options and the hindrance to introducing these measures in hospitals and aged care facilities is basically money.

What can family members do to help?  Here are some suggestions:
1. Make a playlist of music that you remember your parent loving when you were a child and put this music on an IPod or other music device that comes with large headphones.  Ask visitors to put on the music for your parent before they leave a visit.  Ask staff to do the same at a regular time during each day.
2. Make your own audio book.  Tape yourself reading chapters from a book your parent liked or would like.  This can be done in 20mins sections with a short greeting from you.  As above - ask that your parent be helped to set up a listening time during the day.
3. Provide a box of family photos for your parent to look through.
4. When the weather is good take your parent outside for a walk (if possible) or wheel them out to enjoy the sunshine.  Moving outside of the four walls they spend most of their time confined in will help stimulate the mind and reduce feelings of being trapped.  Ask that other visitors, including volunteers, to do the same.
5.  Fill a fiddle box with things to touch and do, especially good for people with dementia.
6. Visits from children and pets, initially tested in short bursts, may also help.

Finally, the idea is to be creative and come up with ideas that will relieve the stress of whiling away days with nothing to do.  Boredom soon becomes a serious mental health problem for all humans.
Here is a link to an interesting article from Ina Jaffe and Robert Bernincasa at NPR:  Old an Overmedicated: The Real Drug Problem in Nursing Homes

dinsdag 1 maart 2016

What to Look for in an Aged Care Facility


Nursing homes or high care facilities exist to help care for elderly people who require more help on a daily basis than is available within their own homes from community care services. Generally if you can't independently mobilise, shower, dress and feed yourself - and if you are unsafe being alone in your own home (due to dementia, falls risk, chronic pain) - a nursing home admission is likely.


During my recent trip to Australia, I accompanied my mother on visits to nursing homes planning for my father's discharge from hospital. Following his stroke, my father needs two people to move him anywhere, remains very confused, and requires daily intervention to meet all his needs. As an aged care social worker I have visited many nursing homes over the years - and knew what to expect on this visit. My mother did not have the same experience and found the visits - or at least seeing older people at their most vulnerable - confronting.


To help her through this experience, we needed to keep a practical focus. To do this I had a mental checklist of questions that I asked at each facility visit. This list included the services on offer, the routines, the rooms, the medical care, the food, the cost, and the chance of an available room. Knowing my father's preference to sit in the sunshine and his fear of ending up in a nursing home - added to my personal list of what to look for.... that is, a room with access to the outside in a facility that looked nothing like an old style nursing home and had friendly, professional staff.


After some searching I found a useful checklist online for family members seeking a bed in an aged care facility. The list is comprehensive and will need to be adapted to what is available in each country. It will also need adaptation to meet the personal likes and dislikes of the family member needing admission. https://www.medicare.gov/files/nursing-home-checklist.pdf

zaterdag 27 februari 2016

Strokes + Dementia + The Nun Study





My father is still is hospital after the stroke he sustained on 13 Feb, 2016. He remains very confused and unable to move his left arm or leg. After a short stint in the rehabilitation unit - doctors have deemed him a non-viable rehabilitation patient due to his dementia, which is significantly worse since the stroke.
I have been reading up on the topic of dementia and stroke. It appears that for people with Alzheimer's disease (one type of dementia) the chance of confusion dissipating is much higher than for people who have a vascular dementia. Makes sense since strokes (including TIAs) and vascular dementia are common bed-buddies.
Below is an extract taken from a blogpost about strokes on Welcome Trust - about a study conducted by Dr David Snowdon looking at the brains of hundreds of nuns comparing brains damaged by strokes and dementia. I love this study as it isn't contaminated by additional, uncontrollable risk factors. Actually, the entire post is fascinating and worth reading. References for the Nun Study are available on the original post.
‘Ageing with Grace’
In the 1990s, a landmark US study began to show the power of the interplay between vascular disease and dementia. The Nun Study has followed several hundred School Sisters of Notre Dame, who were originally recruited by epidemiologist Dr David Snowdon. Remarkably, these nuns all agreed to donate their brains to the study after they died. When allied with information from mental and physical tests in life, the post-mortem findings allow the researchers to assess the connections between potential risk factors, signs of dementia and brain pathology.
In a book about the Nun Study, Snowdon wrote: “Strokes can bring on the sudden appearance of dementia symptoms that are caused by the rupture or blockage of a blood vessel. In contrast, the symptoms of Alzheimer’s disease usually progress slowly. However, with advancing age, these two diseases may become intertwined and confused. How stroke and Alzheimer’s knot together is far from an academic question. Effective prevention and treatment strategies might result from untying that knot.”
Because the nuns have lived very similar lives in the same environment, the degree of confounding by other factors is minimal. For example, none of them smoked and they all had essentially the same diet and lifestyle. Differences between those who developed dementia and those who didn’t can therefore be picked up more readily than in broader population studies.
The results were startling. In a 1997 paper published in the Journal of the American Medical Association, Snowdon and colleagues presented findings on the links between dementia in life, signs of vascular damage and the characteristic signs of Alzheimer’s disease – amyloid plaques and tau tangles – in the nuns’ brains.
Of those with the plaques and tangles of Alzheimer’s disease but no signs of stroke, 57 per cent had had dementia. But of those with both Alzheimer’s and stroke damage, the proportion with dementia was 93 per cent. “What we found,” wrote Snowdon, “went beyond loosening the knot of confusion regarding how Alzheimer’s disease and stroke interact – it challenged some of the most common diagnostic truisms.”
Stewart says there are two possible explanations for how vascular disease exacerbates the dementia caused by Alzheimer’s disease: “Vascular changes in the brain might be directly linked to amyloid plaques and tau tangles – there is some evidence for this in studies where animals with ischaemia in the brain seemed to produce more amyloid.
“Or, and there is more evidence for this, there are two parallel processes combining to cause dementia. Each causes damage to the brain and, as the damage accumulates, the resulting dementia becomes more severe.”
It is also possible that strokes impair the brain in such a way as to reveal undiagnosed dementia. Stewart explains that, in the early stages of Alzheimer’s disease, people can often compensate for signs of dementia such as memory loss for quite a long time. Compensating becomes much harder when the effects of vascular disease are causing problems in other brain functions as well.
Either way, vascular damage caused by strokes, whether detected in life or not, increased the nuns’ risk of dementia, and it was clear that the classic hallmarks of Alzheimer’s disease were not enough on their own to guarantee dementia.

dinsdag 16 februari 2016

STROKES



My dad is in hospital.  He sustained a hemorrhagic stroke last Friday and has lost movement and feeling on the left side of his body.  Nine months ago I bought my plane ticket so that I could be with him to celebrate his 77th birthday on Saturday.  The stroke happened the day before I was due to leave.  His timing is odd.

Today is day 5 post-stroke for my dad.  Over the past four days he has become more alert although his dementia has become more debilitating.  This means that he doesn't recognise family or follow conversations.  He can't feed himself, dress himself, move from his bed or answer questions.  All the same the medical team have referred him to the rehabilitation unit.  I anticipate some very frustrated physiotherapists and occupational therapists who try to re-teach him lost skills,

Long term we don't know what is going to happen but I want to help my mother prepare by knowing her options.  Today I will make arrangements for her to visit nursing home facilities - because I suspect that my dad will continue needing nursing care in the long term and that bringing him home would be unsafe and unviable for both my parents.  It is a sad time.

Today's link is to an overview on strokes:  overview

donderdag 11 februari 2016

Virtual Retirement Villages




Virtual retirement villages exist in the Netherlands, USA and Australia (Sydney).  These online communities were originally established so that older people can remain in their own homes, regardless of ill-health and poor mobility.  Villagers enlist the help of a network of local people and organisations - when and if they need help.  Membership in the village gives the person access to the network, social opportunities, and ultimately support that meets their own individual needs. Consumer Power!!

Here is a link to an article from the New York Times:  Virtual Retirement Villages

maandag 8 februari 2016

Tracking devices for people with dementia


Recently I have been researching tracking devices available for people with dementia. The idea came about after I saw an article in a local Dutch newspapers suggesting that people with dementia could now freely walk the streets without the risk of becoming disorientated to place - or lost - and unable to find their way home.  Basically the person has a chip placed somewhere in their clothing, shoes or watch that is registered with a track and trace service.  The service is able to remotely read the chip and identify the person's location.
Wonderful technology to prolong independence in people with dementia!  Here is a link to a blog post written by Caitlin Burm for Senior Living Blog

GPS tracking devices for people with dementia

donderdag 4 februari 2016

Safety Issues



Being safe in your own home takes some planning for older people.  Generally adapting to getting older means making life simpler.  Little things like moving objects onto shelves that you can reach without needing to stand on chairs - are important.  An older person falling over is serious - with many older people ending up in hospital due to broken bones and head injuries.
Here is a link to a comprehensive list of safety measures relevant to older people - or younger people with mobility problems from All Seasons HomeCare.


dinsdag 2 februari 2016

End of life issues - a blog post by Louis Profeta

Here is a reposting of a blogpost "I know you love me - now let me die"  written by Louis Profeta M.D.  It covers end of life issues - from the individual, family and medical team perspectives.

https://exopermaculture.com/2016/01/19/how-we-used-to-die-how-we-die-now/