Tag Archives: compassionate touch

Family Caregiver, Hospital Professionals, Senior Care Professionals

Down Syndrome and Alzheimer’s – the Challenges of Diagnosis

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Research confirms that by the age of 40, almost 100% of persons with Down syndrome who die have changes in the brain associated with Alzheimer’s disease (AD).  Understanding this link and the challenges of a diagnosis of AD in persons with Down syndrome is important for families and healthcare professionals.

Down Syndrome occurs when a person has three copies of the 21st chromosome instead of the normal two copies.  Studies show that one of the main genes responsible for AD is on the 21st chromosome and is more active in persons with Down syndrome.  Because of this extra copy of the Alzheimer gene, virtually 100% of people with Down syndrome will develop the plaques and tangles in the brain associated with AD, but not necessarily the same memory loss.  Although research is not complete, it is estimated that about 50% of persons with Down syndrome will develop the characteristic memory problems of AD before age 50.

Testing for AD in persons with Down syndrome is often challenging.  Diagnosis of AD is difficult for a number of reasons:

  • Persons with Down syndrome are susceptible to hypothyroidism and depression, which are both reversible conditions but often go untreated and can be mistaken for AD.
  • Side effects of medications taken for either of these conditions can also mimic AD.
  • Normal AD skills testing are often not applicable for persons with Down syndrome simply because of learning differences.
  • Communication skills of persons with Downs syndrome may affect the results of assessment testing.

Families need to watch for signs of AD, especially as their loved one reaches middle age years.  Diagnosis is important, but also education, resources, and support are especially critical for care partners.  Learning to better respond to surprising new behaviors will prepare families for AD symptoms, such as changes in judgment,  processing speed, memory recall, to name a few.

Care partners, either family or professionals, need to have access to new communication tools, understand that care processes will need to be adjusted as well as home or residential changes to their living environment.  Staff and family training will help care partners better serve their residents and loved ones.

Person-centered care approaches to help persons with Down’s syndrome who have developed AD is key to maintaining a loving, trusting environment, where they feel loved, valued and are treated as individuals.

Pam Brandon is President and Founder of AGE-u-cate® Training Institute and a passionate advocate for culture change, improving the quality of life of aging adults, and transformative training for professional and family care partners.  She is the creator of the internationally recognized Dementia Live® simulation experience and collaborated with expert Ann Catlin on the transformational Compassionate Touch® training.  

References:

http://Dementia.org.au

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Family Caregiver, Hospital Professionals, Senior Care Professionals

Is it Delirium or Dementia – Learn the Differences

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Delirium is an acute disorder of attention and global cognition, including perception and memory, and is treatable.  Learning the differences between delirium and dementia is important for professional and family caregivers, as the diagnosis is missed in more than 50% of the cases.

According to the Alzheimer’s Association, dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer’s is the most common type of dementia.

Persons who have dementia are at an increased risk of delirium, however, it is important to learn the differences.  Risk factors for delirium include dementia, pre-existing brain disease, medications, and age.

Delirium has serious implications for older adults, especially those who are at higher risks.  Sometimes referred to as hospital delirium or post-operative confusion, dementia-like symptoms can be alarming to families and often misdiagnosed by healthcare professionals.

Patients who experience hospital or post-operative dementia may exhibit symptoms such as agitation, experience hallucinations or delusions, and often extreme confusion.  Conversely, they may become extremely quiet.  Often this is accompanied by a rapid decline in one’s mental state.

Older adult patients in hospitals or in rehabilitation facilities who have undergone surgery, had an infection, experienced trauma, or spent time in ICU are more vulnerable to experiencing delirium.

Examples of delirium causes (or aggravators) may be untreated pain, dehydration,  constipation, fear, and anxiety of a changed environment (such as a hospital setting).   Unfortunately, delirium can be aggravated even more in older adults that are hospitalized, then moved to a skilled nursing facility, where they may be at higher risks of infection and other health complications.

Families must be diligent to note any changes in mental state and discuss these immediately with healthcare professionals.  Because families will be more familiar with their loved ones’ “normal” state (whether that includes any level of pre-existing dementia or not), sharing a baseline of that person’s behavior is important to determine changes that are not normal.

Non-pharmacological management of delirium should be the first approach in treatment.  This may include having someone sit with the person to aid in helping him/her feel secure, utilizing soft music and touch to provide reassurance and calm.  Bring in photographs of loved ones or special memories that may help the person divert attention from strange or new surroundings.

Families should always discuss non-pharmacological treatment before a loved one is administered medications.  If they have had any drug previously for such conditions, such as antipsychotic or sleeping aids and their loved one has had an adverse reaction, be sure to let healthcare professionals know this.  Your goal is to avoid aggravating the condition and potential side effects of withdrawal.

While dementia and delirium differ, it is important to note that behaviors may be similar and that proper communications tools for care partners will prove critical in responding to their unmet needs and determining a safe treatment plan with the best outcomes possible.

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® Simulation Experience and co-developer of Compassionate Touch® training for professional and family caregivers.   Pam may be contacted at pam@AGEucate.com.

References:

Johns Hopkins Medicine

https://www.hopkinsmedicine.org/gec/series/dementia.html#delirium

Aging in the Workplace, Hospital Professionals, Senior Care Professionals

Ushering in a New Culture of Change at Pioneer Network

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We are honored to be a part of the National Pioneer Network Conference kicking off today in beautiful Denver, Colorado.  Ushering in a New Culture of Change promises to be an enlightening and invigorating educational and networking event for participants and those serving the elder care industry.  AGE-u-cate® Training Institute will be offering it’s internationally acclaimed Dementia Live® Experience and Compassionate Touch® Program to innovators

Pioneer Network was founded in 1997 by a small group of prominent professionals in long-term care who were pioneers in changing the culture of aging. These forward thinkers developed the mission and vision, as well as the values and principles, that continue to guide their work to this day.  Today, Pioneer Network is a large, diverse group of passionate individuals from the entire spectrum of aging services. Most are engaged in some aspect of senior living or long-term care which includes nursing homes, assisted living, and other providers of services and supports for elders, as well as the generous supporters, including people that work, live in or visit these settings.

The goals of Pioneer Network have and continue to be a model of care that supports and makes possible for our elders these elements:

Life-Affirming, that is promoting a positive outlook that encourages optimism about life; one that is hopeful and ultimately enjoyable.

Satisfying, meaning that desires, expectations, and needs of the individual are being met so that the person has a sense of contentment.

Humane, which is characterized by tenderness, compassion, and sympathy for our elders and those who are suffering.

Meaningful, which simply is having a sense of purpose and a meaning in their lives.

Pioneer Network was started by pioneers and to this day continues to lead the way for a culture of change in elder care around the world.  We face many challenges ahead in meeting the needs of the fast-growing elder population,  but it is through the efforts of organizations such as this and many others, collaborating with passionate-life minded people that we have a future for elders that can usher in new opportunities for personal growth, improved care, and certainly a life worth living.  Thank you to the leaders at Pioneer Network for the hard work you do every day to improve the lives of our elders and those who serve them.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and their caregivers.  Pam is the creator of the internationally acclaimed Dementia Live® Simulation Experience and other innovative dementia programs.  Pam may be reached at pam@AGEucate.com.

 

 

Hospital Professionals, Senior Care Professionals, The Family Caregiver

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

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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.