Physical help to care for senior loved ones includes help with daily tasks, decision-making, preparing
meals, running errands and performing chores. In addition, caregivers need emotional support to deal
with the stress of caring for a loved one who has been diagnosed with dementia.
Family caregivers of people with dementia, often called the invisible second patients, are critical to the
quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive,
are generally negative, with high rates of burden and psychological morbidity as well as social isolation,
physical ill-health, and financial hardship.
There are an estimated 30 million people with dementia worldwide currently, and this figure is likely to
double every 20 years. People with dementia generally require high levels of care, most of which is
provided by informal or family caregivers. Without caregivers, people with dementia would have a
poorer quality of life and would need institutional care more quickly, and national economies would be
swept away by the advancing demographic tidal wave. However, this support comes at a cost of
caregiver distress and poorer quality of life.
The majority of people with dementia live in the community (in Western countries estimates vary from
70% to 81%). For approximately 75% of these individuals, care is provided by family and friends.
In 2007 approximately 10 million Americans were caring for a person with Alzheimer’s disease or
another dementia. The largest proportion of those caregivers was spouses, followed by children and
children-in-law, mostly female. The typical profile of a dementia caregiver is a middle-aged or older
female child or spouse of the person with dementia. In the US, at least 60% of unpaid caregivers are
wives, daughters, daughters-in-law, granddaughters, and other female relatives.
Caregivers face many obstacles as they balance caregiving with other demands, including child rearing,
career, and relationships. They are at increased risk for burden, stress, depression, and a variety of other
health complications. The effects on caregivers are diverse and complex, and there are many other
factors that may exacerbate or ameliorate how caregivers react and feel as a result of their role.
Numerous studies report that caring for a person with dementia is more stressful than caring for a
person with a physical disability.
Care giving to demented patients places a heavier burden on the involved family members than
providing care for normal older adults because patients require more supervision, have emotional as
well as behavioral problems, and are less likely to express their gratitude for the care they receive
Emotional risks of caring for a loved one with dementia
- Caregiver stress and anxiety
- Lack of self-care
- Increased mortality
- Chronic stress
In dementia caregivers (compared to other family caregivers), levels of psychological distress and stress
are significantly higher, and levels of self-efficacy, subjective wellbeing, and physical health are
significantly lower. These differences are even larger when compared with non-caregivers. Many factors
may affect the presence of symptoms: being female, being a spousal caregiver, additional stressful life
events, physical health, family history of mental health issues, the quality of relationship between
caregiver and care receiver, life satisfaction, and more.
Dementia caregivers are at an increased risk of various health problems including cardiovascular
problems, lower immunity, poorer immune response to vaccine, slower wound healing, higher levels of
chronic conditions (such as diabetes, arthritis, ulcers, and anemia), more doctor visits and use of
prescription medications, poorer self-rated health, decreased engagement in preventative health
behaviors such as exercise, and greater likelihood of smoking, drinking alcohol, and poor sleep patterns.
Caregivers report a greater number of physical health problems and worse overall health compared with
non-caregiver controls. Those with psychological morbidity and greater strain are even more likely to
have poor physical health and a higher risk of mortality.
Social isolation – Caregivers often lack social contact and support and experience feelings of social
isolation: Caregivers tend to sacrifice their leisure pursuits and hobbies, to restrict time with friends
and family, and to give up or reduce employment. Caregivers who are more satisfied with their social
interactions show fewer negative psychological symptoms. Interventions with psychosocial support
significantly assist and empower caregivers.
Support can come in the form of instrumental support (helping with daily living needs and housework),
emotional support, and informational support (information and knowledge from both health
professionals and from those who have experienced similar situations).
Research outcomes show a positive relationship between social support and psychological well-being
in female caregivers of family members with dementia. Psychosocial support provides a buffer against
burden and stress for caregivers and has clearly reduced caregiver burden and depression.
People with younger-onset dementia and their caregivers face additional problems, as they are more
likely to be working and to have dependent children and more financial responsibilities. Younger
caregivers are often unprepared for the task and experience increased burden, will need to look after
the care receiver for a longer period of time, have fewer appropriate services available to them and feel
more isolated. The particular needs for this group include an urgent need for massive ongoing caregiver
Frequently, appropriate institutionalization is not an option for financial and other reasons. While
nursing home placement helps to reduce the direct care obligations on caregivers, it does not
necessarily reduce caregiver distress. Relief and reduced stress may follow institutionalization, but so
can guilt, anger, anxiety and depression, and financial problems.
Family caregivers are integral to quality of life of people with dementia. The high levels of burden and
psychological morbidity and vulnerability to these are well documented. Caregivers susceptible to
negative effects must be targeted for interventions and support that can ameliorate these effects and
improve the quality of the life for caregivers and – resultantly – of people with dementia.
The suggested issue of focus is the empowerment of women caregivers of family members with
dementia. Caring for a loved one (spouse, parent or sibling) with dementia, especially if he is young
(under age 65), requires enormous emotional fortitude. These women are society’s unsung heroes! In
order to maintain their own emotional and physical wellbeing, they need and deserve extensive
support. This issue is prevalent in every sector of Israel’s population and is relevant for women,
primarily ages 20 and above.
This article was written by the Tzipporah Fried Alzheimer Support Center