Category Archives: The Family Caregiver

Global Dementia Crisis is in our Hands – Are we Prepared?

No longer is dementia a looming public health threat.  It is a global crisis affecting healthcare systems, delivery of long-term care, worker shortages, community infrastructure, families and most importantly, the quality of life for persons living with dementia.

To put into perspective the scope of this global  health crisis let’s look at these recent statistics from the Global Alzheimer’s and Dementia  Alliance:

1. The world’s economy is set to lose a trillion dollars in 2018, rising to $2 trillion by 2030 unless dementia is tackled.

That’s a cost greater than the GDP of all but the 15 richest economies in the world. If global dementia costs were a country, it would be the 16th largest, in-between Indonesia and Mexico.

Dementia already exceeds the market value of the world largest companies such as Apple (US $742 billion) and Google (US $368 billion). Eighty percent of these costs account for the unpaid and formal care for people living with dementia, two-thirds of which is delivered by women.

2. Dementia affects almost 50 million people worldwide, with a new case of dementia occurring somewhere in the world every 3 seconds.

Worryingly, aging populations – especially in low to middle-income countries (LMICs) – are set to exacerbate prevalence rates. The potential ramifications of this are huge. More than half of people with dementia worldwide (58%) live in LMICs – and the number in some regions is expected to increase fivefold by 2050. The number of people living with dementia in high-income countries is also expected to double by 2050.

Despite this, many countries are unprepared for financing long-term care. As social changes in LMICs mean fewer family members are able to provide care, the urgent need for social care will shift to the formal sector.

3. As few as one in 10 individuals receive a diagnosis for dementia in low and middle-income countries, and less than 50% are diagnosed in high-income countries.

Globally there is a persistent lack of understanding that dementia is a medical condition and not a normal part of aging. People living with dementia all over the world desperately need access to a medical practitioner who can provide a diagnosis and help to plan necessary support.

Risk reduction strategies and earlier diagnosis of dementia could save government expenditure by reducing the high cost of emergency and avoidable health interventions, improving care, and by increasing the effectiveness of social, community and other care services.

4. Two out of every three people globally believe there is little or no understanding of dementia in their countries.

People living with dementia and their families frequently face stigma and discrimination – and in some parts of the world can even face violence. Dementia can also have a negative impact on employability – younger people with dementia have reported being made redundant or unable to find work due to discrimination or lack of understanding. This can have an impact on employment rates and social welfare benefits.

Worryingly, in some countries, there’s not even a word for dementia, with many people affected accused of witchcraft and at risk of threats of violence. A lack of recognition or understanding of the condition permeates from within the community right up to a policy level.

Public policy is critically important,  however, the time it takes for policies to trickle down take a long time.  Progress takes place when people step up to the plate to make positive changes in their own communities.  Change that helps families find resources, support, and education.  Leaders who say we want our towns to be dementia aware and friendly, care communities that embrace person-centered care cultures, and hospitals that step up to the urgent need to do things differently.  The dementia crisis is in our hands and we must all work together to create a better tomorrow for those living with dementia.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who care for them.  She is the creator of the internationally recognized Dementia Live® simulation experience.  

Why YOUR City Needs to become Dementia Friendly

I’m honored to be part of the exciting Dementia Friendly Fort Worth initiative.  Not only are we the first major city in Texas to undertake this effort, but one of the largest cities in the United States.  We are part of Dementia Friendly America (DFA), which is a multi-sector collaborative on a mission to foster “dementia friendly” communities across the nation.

DFA is the work of over 35 national, leading organizations, the Dementia Friendly America initiative is catalyzing a movement to more effectively support and serve those across America who are living with dementia and their family and friend care partners. The lead organizations represent all sectors of the community and are collectively leveraging their national reach to activate their local affiliates, members, and branches to convene, participate in and support dementia friendly community efforts at a local level.

Dementia Friendly Fort Worth is organized to educate people in all sectors of the community about dementia, to assist them in becoming dementia friendly and to support and care for those living with dementia and their care partners.

The program offers:

  • Education opportunities for all persons to increase awareness and understanding of dementia
  • Help in the development of better services for persons living with dementia and their care partners
  • Guidance to all sectors of the community to become dementia friendly in their day to day interactions with persons living with dementia
  • Encouragement and support practices and opportunities that enrich the lives of persons living with dementia and their care partners.

Why be a Dementia Friendly city?  There are more than 120 types of dementia, for which there is currently no cure.  More than 60% of these individuals live in your neighborhood and use the businesses and services in your community.   Currently, there are over 10 million Americans living with Alzheimer’s Disease and other forms of dementia.  This number is expected to grow drastically in the years ahead.  The massive group of baby boomers (10,000 a day turning 65) is living longer, and dementia occurrence increases with age.  A person who is 65 has a 1 in 10 chance of having dementia and that rises to a 1 in 3 chance for someone 85.  The fastest growing segment of our population are those 85 and over.

According to the Dementia Friendly Toolkit Overview, communities are encouraged to progress through four phases as they journey to become dementia friendly: Convene, Engage, Analyze, and Act.  In Fort Worth, we have created sector groups which are defining standards for various business groups to be certified as dementia friendly, using the toolkit from Dementia Friendly America.

In just 4 months, leaders from faith communities, long-term care, hospitals, businesses, Alzheimer’s Association, Area Agencies on Aging and others have come together to move forward with outlining initiatives and plans to reach out to the greater Fort Worth community.  It’s very exciting to see the stakeholders investing in this project, including the FW Mayor and city council.  Everyone sees the urgent need to address the needs of those living with dementia and their care partners.

Funding for dementia friendly projects comes from donations from individuals, companies, organization, and foundations which have a desire to make a difference in the lives of those living with dementia.  First United Methodist Fort Worth was the catalyst to provide important seed money for this project, and other are quickly joining them.  It’s definitely a model of grassroots efforts and the passion of hundreds of people from virtually every sector of the community.

For more information on how to become a dementia-friendly city http://dfaamerica.org.   

 Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the internationally recognized Dementia Live® program, a transformational experience, and training to help care partners understand life with dementia.  Dementia Live is an educational outreach program of the Dementia Friendly initiatives in Fort Worth and Grayslake, Illinois.  

News Flash! Our Seniors are Drowning in Drugs

I recently attended a conference and listened to a geriatrician share that the average number of medications her patients are on when they come to her practice is a shocking 18 – 24.  That’s per DAY! No doubt we have a serious epidemic in this country – our seniors are drowning in drugs.

According to the National Institutes of Health, although the term polypharmacy has evolved over time and is often used to mean many different things in different situations, its basic definition is quite simple;  more drugs are prescribed or taken than are clinically appropriate. The specific number of drugs taken is not itself indicative of polypharmacy as all of the drugs may be clinically necessary and appropriate for the patient; however, as the number of prescribed drugs increases, so do the chances of Polypharmacy.   The most worrisome consequence of polypharmacy is the occurrence of adverse drug reactions (ADRs), in addition to increased drug costs and patient quality of life are also significant issues.  The elderly population, which often suffers from multiple chronic diseases requiring multiple medications, continues to increase. These patients are much more likely to experience Polypharmacy and its negative consequences, especially ADRs.

ADRs are one of the most troubling issues surrounding medication use in the elderly, as this patient population is more likely to have poor outcomes than others.  ADRs affects approximately 10-20% of hospitalized patients and around 7% of the general population; this number increases when the population of interest is limited to the elderly.

The consequences of drowning in drugs are greatly exacerbated by the dramatic rise in older adults living with dementia.  Not only are they taking too many drugs, but often they are not taking the drugs as prescribed.  Statistics also point to a very low percentage of drugs to treat AD and other forms of dementia as being effective – less than 10% have positive outcomes.

Healthcare professionals across the spectrum are faced daily with the challenges of helping these older adults and their families sort through their medication maze.  It’s simply not easy when drugs are being prescribed on top of one another.

If you or a loved one are facing these challenges, find a healthcare professional who is compassionate and willing to sort through the maze of medications.  It will involve bringing in all prescribed medications, supplements and being willing to patiently partner with a caring healthcare professional.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  

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What Nurses Need to Know about Parkinson’s Disease

As a  geriatric nurse, I rather frequently see the effects of age and disease on the body. Of course, different diseases manifest in different ways, and while some of those signs and symptoms may mirror those of old age, others may not. As a result, it is important that I, and other geriatric nurses like me, recognize how Parkinson’s disease might affect a patient under our care so that we can better care for them and meet their needs.

Do you know how Parkinson’s affects patients? Years ago, I went on a bicycle tour with some friends. As I was one of the strongest cycles in our group, I was responsible for towing the trailer in which we had stored most of our camping gear. It obviously made cycling more difficult, so I was working harder. Later I realized that my rear brakes had also locked up, so in addition to towing the trailer, I was also trying to ride through my brakes.

And that’s sort of what Parkinson’s patients experience. It’s a bit like trying to drive with a foot on the brake pedal. Everything is much more difficult and can be a bit herky-jerky, sluggish and uncoordinated.

Dopamine’s effect

In large part, this is because of the effect dopamine normally causes in our body and brain. Because Parkinson’s patients don’t have enough dopamine (the chemical responsible for body movement control and coordination) in their brain, they have less control over their body movements. In essence, the brain is putting the brakes on their movement, and while they can try and fight through it, they have far less control as a result of the decreased dopamine.

A chronic condition

This is exacerbated by the fact that Parkinson’s is a chronic degenerative condition, meaning it never goes away and continues to worsen as patients age. Fortunately, it is not normally diagnosed early in life; the average age of onset is 60, though some (roughly 10 percent) Parkinson’s patients may be diagnosed as early as the age of 30.

Worse, no one yet knows what causes Parkinson’s, which means there’s no cure. (In fact, diagnosis can be rather difficult, as there’s no yet agreed upon test, either.)

So about that dopamine?

The substantia nigra is a small center in the brain stem, just above the spinal cord, which is responsible for dopamine production. As we noted earlier, dopamine is the neurotransmitter responsible for balance and movement, so decreased dopamine causes problems. And for Parkinson’s patients, that’s exactly what happens: As they age, the substantia nigra degenerates, resulting in less and less dopamine production, which in turn causes diminished control of movements, including tremors and a loss of control.

Given that most experts agree that symptoms don’t present until 75 or 80 percent of the substantia nigra has already degenerated, the onset of Parkinson’s usually comes as a surprise, and then can progress rather quickly as more cells die and less dopamine is produced.

Researchers still don’t know why the substantia nigra degenerates, either, or how to stop it. At this point, the best they can do is try to artificially replicate the dopamine levels available to the body through medications that temporarily improve coordination and movement.

Parkinson’s progression

Most Parkinson’s experts use the Hoehn-Yahr scale, which breaks down patient’s disease progression into five stages. Let’s look at each stage a little more closely:

  1. In the first stage, symptoms are generally mild, and may only affect one side of the body. This may simply manifest as slight changes in posture, facial expression, or walking.
  2. In the second stage, posture and walking are more clearly affected, and on both sides of the body. Minor disability may also manifest in the second stage.
  3. In the third stage, symptoms are quite obvious, and balance and walking are quite affected. Even standing may be difficult, and coordination begins to require significant help.
  4. In the fourth stage, disability is sufficient enough that patients can no longer safely live alone. Slow, stiff movements are the norm, and walking requires assistance.
  5. In the fifth stage, disability is more severe, and patients can no longer walk or stand without significant assistance. As a result of heightened and severe disability, patients become completely dependent on others in this fifth and final stage, and require constant care as a result.

Given that each stage may last many years, however, patients often have time to adjust to their new normal before entering the next stage, hard as those adjustments may be—both for themselves and for their support networks of family and friends.

Parkinson’s major symptoms

While the symptoms that manifest for Parkinson’s patients may vary somewhat, in general, there are several main symptoms that affect Parkinson’s patients.

  1. Tremors. Tremors are most noticeable when patients are at rest and usually start with the hands or feet, though they can also affect the face. Generally, tremors occur at a consistent rate of 4-6 shakes per second and may occur on one side of the body (in stage 1) or both (in stage 2 or later). Stress and other factors may make tremors worse.
  2. Rigidity. Rigidity or stiffness is the result of tense, tight muscles, which can make movement difficult. It may affect arms, legs, or other muscle groups altogether. This can sometimes lead to difficulties in swallowing, eating, breathing, or talking. Additionally, facial rigidity can lead to decreased facial expression, which can also affect their ability to communicate well.
  3. Slowness of movement. This slowness, also known as bradykinesia, isn’t necessarily predictable in when it strikes, either, which can be doubly frustrating for Parkinson’s patients. As a result, routine things like eating, dressing, or bathing can take far longer than expected, which can add to frustrations and stress, which in turn can sometimes make other symptoms (such as tremors) worse.
  4. Unsteadiness. Postural instability for Parkinson’s patients is the result of both rigidity and decreased muscular control, and can result in poor posture, droopy shoulders, a lowered head, coordination issues, and accidents. Parkinson’s patients may fall easily, or may have trouble with what might otherwise seem like routine tasks; just think about trying to chop vegetables if your hand is shaking and you don’t have very good control of your arm, for instance. This, too, can be an incredibly frustrating part of daily life for Parkinson’s patients.

Takeaway points for better care

I want to leave you with a few key points I’ve picked up that have helped me be a better nurse to my Parkinson’s patients:

  1. Parkinson’s will eventually affect every part of the mind and body, and as a result, it’s incredibly important that you are clear with Parkinson’s patients. Don’t tell them it will get better, because they also know that’s not the way the disease works.
  2. There is no cure for Parkinson’s. The best you can hope for is treatment that helps them manage their symptoms. Kindness and patience go a long way.
  3. It’s also important that you help Parkinson’s patients preserve their bits of independence as best you can for as long as you can. Even if it seems like it is taking them forever or is difficult for them, allowing them to still complete simple tasks on their own is still better than doing those tasks for them. These are adults for whom a disease is returning them to childhood, so be patient and kind with them.
  4. Don’t ever take their anxieties, anger, or frustration personal. Remember how hard this must be for them, and remember, kindness and patience go a long way, especially as stress can exacerbate their symptoms.
  5. Watch for mental health warning signs. Anxiety, depression, and withdrawal are all incredibly common for Parkinson’s patients, who can watch their abilities slip away from them regularly. It’s important that you keep an eye on their mental health as well as you treat them, and report warning signs as you see them, so they can get the appropriate mental health care.

Parkinson’s is a debilitating disease or can be, and good healthcare can go a long way. As a geriatric nurse, I’ve seen that all too well in my own caregiving.

Multiple Sclerosis – An infographic by GeriatricNursing.org

Rebecca Evans is a geriatric nurse who is consistently surprised by how much age can be far more of a mindset than a number.  She believes that access to the right information can improve a patient’s care, as they are better able to advocate for themselves.  More information can be accessed at geriatricnursing.org.

AGE-u-cate Training Institute develops and delivers aging and dementia training for professional and family caregivers. We welcome guest bloggers who have valuable information to share with others.   Please contact us at info@ageucate.com