APATHY strikes 90% of people with dementia, sooner or later. Faster decline and care problems result. Apathy is the most common neuropsychiatric symptom of dementia, with a bigger impact than memory loss. Proper stimulation makes all the difference. Learn why.
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A new study from the University of Exeter has found that apathy is present in nearly half of all people with dementia, at any single point in time. 90% of the people with dementia experience apathy at some point.

Apathy is the most common neuropsychiatric symptom of dementia, with a bigger impact on function than memory loss — yet it is under-researched and often forgotten in care. It is often distinct from Depression.

Even though it is so incredibly common, apathy is often ignored, as it is less disruptive in settings such as care homes than symptoms like aggression. Defined by a loss of interest and emotions, it is extremely distressing for families and it is linked with more severe dementia and worse clinical symptoms.

Stimulation Keeps Dementia from Declining

People with dementia are less likely to be apathetic if they live in an appropriately stimulating environment, according to nursing researchers at Penn State.

According to a report by The Centers for Disease Control, about half the people in Nursing homes have dementia. 90% of them experience apathy at some point, one of the most common neurobehavioral symptoms in dementia. Those with mild dementia will decline more quickly into severe dementia if they also suffer from apathy.

A stimulating environment made all the difference in this revealing study of 5 factors. Specifically, moderate stimulation did the most to lift people out of their apathy, while none or too much made it worse.

Help Them Stay Engaged

Ying-Ling Jao, assistant professor of nursing, Penn State, identified 4 negative consequences of apathy in dementia:

1. Persons with dementia who are also apathetic won’t be curious about the world around them;
2. They are not motivated to carry out activity nor engage with those around them, in either a positive or a negative way.
3. The individuals’ cognitive function will likely decline faster.
4. Caregivers will have more difficulty with their Caregiving and are more likely to become depressed.

Jao observed 40 nursing home residents with dementia. She watched videos of each taken throughout a typical day. Three videos were chosen for each resident from recordings made during a previous study:

• One taken at a mealtime,
• One during a direct interaction between the resident and staff
• One that was randomly selected.

Jao reports her results in The Gerontologist. She said,

‘The purpose of this study was to examine the relationship between environmental characteristics and apathy in long-term care residents with dementia. My interest in apathy was mainly driven by my clinical observations in nursing homes when I was a nurse practitioner student. I remember that no matter which nursing home I visited, I often saw a crowd of residents sitting in the living room or hallway with no interest in the surroundings and no emotional expression.’

5 Influences on Apathy in Dementia

Jao zoomed in on five key characteristics that affect the quality of life in nursing homes:

1. Environmental stimulation
2. Ambiance
3. Crowding
4. Staff familiarity
5. Light and sounds.

Of the five, clear and strong environmental stimulation associated most strongly with lower apathy in residents. This means an environment without competing background noise, and with a single straightforward stimulus. A good example is music Therapy in a quiet room. A strong stimulus is intense, persistent, interesting and out of the ordinary. Even routine activities, such as a regular conversation or meal, count as moderate stimulation. A birthday party is considered strong simulation.

How Common is Apathy in Dementia?

“Apathy strikes 90% of people with dementia at some point in time. Researchers digging deeper into the prevalence of apathy in dementia took a look at how much apathy would you find in a specific point in time. Led by the University of Exeter and presented at the Alzheimer’s Association International Conference, the research analysed 4,320 people with Alzheimer’s from 20 cohort studies.”

At the start of the study, 45% presented with apathy, and 20% had persistent apathy over time. Researchers found that a proportion had apathy without depression, which suggests that the symptom might have its own unique clinical and biological profile when compared to apathy with depression and depression only.

Why is Apathy Ignored in Dementia?

Dr Miguel de Silva Vasconcelos, of the University of Exeter and King’s College London, said :

“Apathy is an under-researched and often ignored symptom of dementia. It can be overlooked because people with apathy seem less disruptive and less engaging, but it has a huge impact on the quality of life of people living with dementia, and their families. Where people withdraw from activities, it can accelerate cognitive decline and we know that there are higher mortality rates in people with apathy. It’s now time this symptom was recognised and prioritised in research and understanding.”

Professor Clive Ballard, of the University of Exeter Medical School, said:

“Apathy is the forgotten symptom of dementia, yet it can have devastating consequences. Our research shows just how common apathy is in people with dementia, and we now need to understand it better so we can find effective new treatments. Our WHELD study to improve care home staff training through personalised care and social interaction included an Exercise programme that improved apathy, so we know we can make a difference. This is a real opportunity for interventions that could significantly benefit thousands of people with dementia. “

Strong Stimulation, No Stimulation, Overwhelming Stimulation

Assistant Professor Jao said,

‘Interestingly, our results showed that clear and strong environmental stimulation is related to lower apathy, while no stimulation or an overwhelming environment with no single clear stimulation is related to higher apathy.’

 

‘One of the innovative features of this study is that we used the Person-Environment Apathy Rating scale to measure environmental stimulation at an individual level. I believe that the same stimulation may be perceived differently or bring about different responses for different individuals in the same environment based on the individual’s characteristics, interests and relevance to the stimulation. In fact, a stimulus may be clear to one person but unclear to another because of differences in hearing or visual abilities, especially in older adults.’

 

‘One of the most important implications of these findings is that they will guide us in designing appropriate physical and social environments for dementia care that helps prevent or decrease apathy. We need more people to care about apathy for older adults with dementia.’

Jao plans to continue this research by replicating the study with a larger sample size and by looking more closely at the quality of interaction and communication between nursing home residents and their caregivers.

Sources:

• University of Exeter
• Based on the article by Victoria M. Indivero for Penn State.

Reference:

1. Y.-L. Jao, D. L. Algase, J. K. Specht, K. Williams. The Association Between Characteristics of Care Environments and Apathy in Residents With Dementia in Long-term Care Facilities. The Gerontologist, 2015; 55 (Suppl 1): S27 DOI: 10.1093/geront/gnu166

Retrieved August 27, 2019 from http://www.alzheimersweekly.com/2015/06/beating-apathy-in-dementia.html

Dr. Ethelle G. Lord Master Dementia Coach

Dr. Lord is a published author, educator, speaker and master Alzheimer/dementia coach.

Dr. Éthelle Lord holds a doctorate degree in management from the University of Phoenix (2010), a master’s degree in counseling from the University of Maine (1992), a graduate certificate as a life coach from CoachU (2002), is a practitioner of energy medicine (Good Shepherd Healing System or GSHS), and several certificates in a variety of professional training programs that support her work. Her most recent certification is an advanced training certificate in face reading (2018) that allows her to quickly and effectively relate to someone who is living with dementia. She considers face reading an essential tool for all dementia coaches and care providers. Dr. Lord is a practitioner of energy medicine, especially the Good Shepherd Healing System (GSHS).

Dr. Lord has 21 years of first-hand experience as a dementia caregiver for her husband, Major Larry S. Potter, USAF Ret., who was officially diagnosed in January 2003 with Vascular Dementia. His dementia was contained in 2015 when he participated as a subject in a small but informal energy medicine study along with six other participants from California to France. Larry died on June 18, 2020 from a broken heart since the nursing facility was locked down to all visitors due to the Covid-19.

In the summer of 2012, she was a keynote in Chicago to a large audience of neurologists from all over the world who were seeking first-hand information on family caregiving and Alzheimer’s. Her keynote was entitled “Yes Virginia, You Can Have an Alzheimer’s-Friendly Healthcare Experience”. From that moment on, she realized the great need for the importance of adopting a universal standard in training and delivering dementia care by professionals and family caregivers.