Category Archives: The Family Caregiver

Are we Confusing Life Enrichment with Activities in Dementia Care?

What exactly is the meaning of Life Enrichment?  

Quite simply, Life Enrichment it is the act of bringing purpose and joy to persons living with memory loss. As dementia progresses, engaging in a life skill or routine task becomes increasingly challenging, and seniors need the support of someone who can adapt activities so they can still feel a sense of accomplishment, success and enjoyment.

How do Activities differ?

In senior care,  Activities are the entertainment, planned events, exercise classes etc. that are posted on weekly and monthly charts for anyone who is able to join in.

So, the question then is, are we too often confusing Life Enrichment with Activities?   

Too often, the answer is yes.  These are not the same, although they often intersect.  Person-centered or resident-centered care models must focus on the individual (life enrichment), as opposed to the whole (activities).    While activities are important to everyone living with dementia, those activities must bring purpose and joy to the individual, giving them a feeling of accomplishment.

When we fulfill the purpose, joy, accomplishment needs of an individual, we have a life enrichment model.  For each person, that may or may not coincide with the activities that are offered to all the residents.

Digging Deeper into Life Enrichment

The needs of persons living with dementia change, sometimes daily or even hourly.  Resident-centered care starts with understanding who they are now,  and their life story, allowing us to capture the who, what, why, when and how of their life.  Why is this so critical? Those long-ago snapshots allow us opportunities to engage with that person’s memories that are still intact.  Persons with Alzheimer’s disease and other forms of dementia will most likely retain those distant memories of their younger years while short-term memories fade.

When we take the time to dig deeper,  we discover the person they once were – and still are!  Let’s look at an example:

Kate came into memory care with mid-stage dementia.  She was listless and had no interest in taking part in the Activities that were offered daily.  On the surface, you would think Kate was depressed and had no interest at all.  After a life history assessment and talking with her family, the staff learned that Kate was a landscape architect, master gardener, and avid hiker!  No one would have guessed coming in that Kate had such an interesting career and such knowledge and passion for gardening.

What might life enrichment look like for Kate?  Spending time in the community’s outdoor garden, possibly taking part in garden activities with assistance, certainly photos of projects that she designed as a young architect would capture memories and spark conversation.  How about finding out where some of her hiking adventures were and finding  National Geographic and Travel shows that she might engage with?  Perhaps your community hasVirtual Reality programming in place.  There are tremendous products now that literally transform life experiences for persons with dementia. A memory basket of gardening items, tools that she used in her career and personal photos of her gardens, hiking adventures and certainly her projects could all be kept in a place where staff and families can access easily to engage in quality time together.

Kate may not find any interest in the Activities offered, but that doesn’t mean Life Enrichment has been sacrificed.  For Kate, what gives her purpose, joy, and feelings of accomplishment are not found in the activities area.  That’s okay!  We’ve found the sparks with Kate, and maybe our activities can incorporate some of her needs, but we are certainly not relying on our Activities program to provide Life Enrichment to her as an individual.

For more information on reminiscence training and other innovative dementia programs, please visit http://www.AGEucate.com

Pam Brandon is President/Founder of AGE-u-cate® Training Institute, the creator of the Dementia Live® simulation experience, and Flashback™️ Reminiscence Training.  She is a passionate advocate for aging adults and those who serve them.  Pam may be contacted at pam@AGEucate.com

Understanding Frontotemporal Dementia (FTD) Differences from AD


Although Frontotemporal Dementia (FTD) is largely misunderstood, it is the most common form of dementia for people under age 60.

Originally known as Pick’s Disease and often referred to as such, FTD describes a clinical syndrome and a group of brain disorders associated with shrinking of the frontal and temporal anterior lobes of the brain.  Frontotemporal Dementia differs from Alzheimer’s Disease in two distinct categories:  1) drastic changes in behavior, which will be described below and 2) problem with language 3) genetic component and 4) age at onset.

Behaviors associated with FTD can be either impulsive or bored and listless, and often is associated with inappropriate social behavior.  Some of these may include lack of social filtering or tact; decreased empathy toward others; increased interest in sex;  unexplained agitation;  neglect for personal hygiene; compulsive and often bizarre behavior or sudden changes in food preferences.

Problems with language may include difficulty in forming words and sentences and understanding other’s speech.  Important to note is that spatial skills and memory remain intact, which is a major differentiator from Alzheimer’s disease.

Familial FTD occurs when multiple people in a family across back-to-back generations have FTD or a related condition. The multiple people are usually closely related to each other, like a grandparent, parent and adult child, and they all belong to one side of the family or the other, not both.  This is known as genetic FTD.  About 10% – 20% of all cases of FTD is considered genetic FTD.

FTD typically strikes at a younger age.  The majority of FTD cases occur between the ages of 45 and 64.  In contrast, the average age of diagnosis of Alzheimer’s Disease (AD) is 80.  The impact on work, family, and financial burdens are significantly greater with FTD than AD.

FTD is frequently misdiagnosed as AD, depression, Parkinson’s Disease or a psychiatric condition, making it far less known and understood by the medical community.  As of 2011, there were approximately 60,000 cases of FTD in the US, so it is far less common than AD.  It currently takes 3.6 years to obtain an accurate diagnosis of FTD due to the complexity of symptoms.

Caring for someone with FTD is extremely challenging.  Care partners must be diligent in finding health care professionals who will help in diagnosis, coordinating care.  Like AD caregivers, understanding the disease is paramount.  Learning patient advocacy will offer a tremendous benefit to both care partners in dealing with the day to day changes that often occur and working with the professional care team on medication management and care provisions.

Because it is difficult to diagnose, care partners should be prepared for multiple specialist visits.  Keeping a detailed journal of behaviors will aid in helping doctors look at all the symptoms that the person is exhibiting, not just what they observe in an office visit.

Keeping a healthcare notebook will be a tremendous asset in helping manage doctor visits, medications, and recording patterns of behavior.

Care partners should seek a support group early on, as FTD, like AD, is especially stressful on care partners.  The Association for Frontotemporal Degeneration(AFTD) is an excellent resource of information, publications, a listing of local support groups and more.  Their number is 866-507-7222 or http://www.theaftd.org.

Care partners need to be educated early on in understanding care services, such as In-home care, adult day and residential care.  Finding the right care for each stage of the disease will help families plan for next steps.

Today, there is no cure for FTD and there are no current treatments to slow or stop the progression, but a growing number of interventions – not limited to medications – can help manage FTD symptoms.  It is imperative that FTD be diagnosed and treated by a healthcare professional who has clinical practice with Frontotemporal Dementia.

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 acclaimed Dementia Live® Simulation and Awareness training program.

 

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.