The Undetected and Underdiagnosed Alzheimer's Patient — the Caregiver
“Without the help of the Alzheimer’s Association, I do not think I would have survived to this point.”
– A dementia caregiver
In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer's and other dementias — care valued at $220.2 billion. In 2013, caregivers of people with Alzheimer's faced a devastating financial toll to the tune of $9.3 billion in additional health care costs of their own. Nearly 60 percent of Alzheimer's and dementia caregivers rated the emotional stress of caregiving as high or very high, and more than one-third reported symptoms of depression.*
Caring for a person with Alzheimer’s poses special challenges; they often need extensive assistance with activities of daily living and can demonstrate severe behavioral problems. In addition, dementia caregivers provide care longer on average than caregivers of older adults with other conditions.
The Physical Burden
The physical impact negatively influences caregivers' health, especially when the care recipient is depressed, is low functioning or exhibits behavioral disturbances. Chronic stress can cause caregivers to break down physically, often increasing the risk of developing chronic conditions, needing more frequent visits to the emergency room or hospitalizations.
Always on Call
As the symptoms of dementia worsen, the demands of caregiving intensify, leaving caregivers feeling as though they are "on duty" 24 hours a day. For the caregiver, this can result in:
- Increased emotional stress
- Impaired immune system responses
- Lost wages due to disruptions in employment
- Depleted income and finances
Mixed Feelings About Long Term Care
Often when the demands of caring for someone with Alzheimer's become overwhelming, caregivers sometimes have no choice but to find a nursing home for appropriate long term care. As a result, they may feel guilty and experience emotional turmoil. At the same time, caring for a person with Alzheimer’s can have some positive aspects, such as family togetherness and the satisfaction of helping and giving back to a relative or friend.
There is Help
Fortunately, there are a number of proven strategies to support caregivers of people with Alzheimer's or dementia. These interventions aim to ameliorate negative aspects of caregiving with the goal of improving health and well-being and, in turn, delaying a nursing home admission. Strategies such as support groups, caregiver education and respite services can offer guidance, encouragement and relief to enhance caregiver and recipient outcomes and reduce distress.
The Alzheimer's Association, New York City Chapter offers programs and services that provide such strategies free of charge, including:
- Information and Referral (24-hour helpline 1-800-272-3900)
- Support Groups, including over 120 groups in all five boroughs, run by professionally-trained leaders
- Private family and individual Care Consultation
- Education and Training
- MedicAlert®+Alzheimer's Association Safe Return® Program
- Early-Stage Services
- Alzheimer's and Dementia Caregiver Center (online information and tips)
- Palliative Care for Advanced Dementia
Clinicians should identify the risk factors and outcomes important to each caregiver and select appropriate interventions. Referral to the Alzheimer's Association, New York City Chapter using the Rapid Referral is simple, easy and guarantees contact by a trained Alzheimer’s Association Helpline staff member within 24 to 48 hours.
*Alzheimer’s Association, 2014 Alzheimer's Disease Facts and Figures.P>