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CAREGIVERS AND MENTAL ILLNESS

Living with Schizophrenia

October 2014

TABLE OF CONTENTS

Caregiving and Mental Illness


Helpful Hints about Schizophrenia for Family Members and Others,
Brian Smith, MS
Through the Maelstrom, Diane Froggatt
Helping with Paperwork and Financial Issues, WFMH
Caring for Older Adults with Mental Illness,
American Psychological Association
Common Issues Faced by Caregivers
o Reconnecting and rebuilding the family after a mental illness
diagnosis
o The financial, emotional and physical health of caregivers
Taking Care of Yourself Caring for the Caregiver
Caregiver Resources

CAREGIVING AND MENTAL ILLNESS


There are approximately 450 million people across the world dealing with a mental illness and approximately
24 million people, aged 15-25, worldwide experiencing schizophrenia, according to the World Health
Organization. Many people with mental illness must rely on family and friends for support and to help them in
their daily activities.
Globally, caregivers play an important and ever-expanding role as developments in medical care find new
ways to help control illness while health and social services systems are resource-challenged.
Caring for those with neurological disorders requires tireless effort, energy and empathy, and indisputably,
greatly impacts the daily lives of caregivers. There are physical, social, emotional, and financial impacts of
caregiving. Schizophrenia together with other serious mental illnesses is one of the most financially costly
illnesses in the world, accounting for 1.5% to 2.5% of total national healthcare budgets based on estimations in
UK, NL, FR and US. As caregivers struggle to balance work, family, and caregiving, their physical and
emotional health is often ignored. The emotional and physical health of caregivers is important not only for
their own quality of life but also for the well-being of the person receiving their care. The risk of
institutionalization of a loved one increases with a decline in the
caregivers physical and mental health.
Caring Every Day messages from the

Caregivers are at risk for many different physical and mental health
National Family Caregivers
Association:
challenges. In general, they suffer from high levels of stress and
frustration, show higher levels of depression than the general
Believe in Yourself.
population, sometimes exhibit harmful behaviors, from increased use
Protect Your Health.
of alcohol or other substances to higher than normal levels of
Reach Out for Help.
hostility. Caregivers are also physically less healthy than nonSpeak Up for Your Rights
caregivers, and have more chronic illnesses like high blood
pressure, heart disease, diabetes and arthritis than their nonwww.thefamilycaregiver.org
caregiving peers. They may suffer from poorer immune function and
from exhaustion. They neglect their own care (have lower levels of
self care and preventive health behaviors than others), and have
higher mortality rates than non-caregivers of the same age.1 Given
these odds, caregivers need to take better care of themselves and reduce their levels of stress, depression,
and anxiety.

As well, though, caring for loved ones with neurological disorders can be rewarding, and has many positive,
life-giving rewards. Beyond the personal satisfaction gained from caregiving, the economic impact of
caregiving is enormous. Caregivers are the backbone of the long-term care systems in many countries, saving
governments millions of dollars each year. In the UK, carers save the government an estimated 119 billion
per year. Providing appropriate support for carers could increase this huge saving, as well as improve health
and wellbeing outcomes for them and the people they care for.
One of the most serious mental disorders is schizophrenia. It is an illness that affects how a person thinks,
feels, and acts. Many people find it difficult to tell the difference between real and imagined experiences, to
think logically, to express feelings, or to behave appropriately. At least 26 million people are living with
schizophrenia worldwide according to the World Health Organization, and many more are indirectly affected by
it. Schizophrenia can impose a heavy toll on the individuals who experience it, and their family members and
caregivers.
As a caregiver, you are an important person in the life of someone living with schizophrenia. Your care and
support, in addition to medicine, therapy, and interventions, can be essential to helping a family member or
friend with schizophrenia or any mental disorder.
1 Family Caregiver Alliance (2007). Caregivers at Risk: A Public Health Concern. Caregiving in California: Issue Paper #1 (2007). Retrieved from
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1962
i
2 Lindstrm E, Eberhard J, Neovius M, Levander S. (2007) Costs of schizophrenia during 5 years. Acta Psychiatr Scand Suppl
3http://www.rethink.org/about-us/commissioning-us/carer-support

HELPFUL HINTS ABOUT SCHIZOPHRENIA FOR FAMILY MEMBERS AND OTHERS


Brian Smith, MS

People with schizophrenia often encounter challenges when it comes to their friends and family. Family often
tries to cope with someone who has schizophrenia for a period of time, but can become frustrated by any
seeming lack of progress in treatment or leaving treatment altogether. A familys emotional support may wane,
and some families cut off all contact with their schizophrenic son, daughter or sibling.
Friends can also fail to understand a person with schizophrenias experiences, and quickly lose interest in
continuing the friendship when the person with schizophrenia deteriorates or drops out of treatment. The most
common complaint amongst friends and family members of a person with schizophrenia is not understanding
how to help them, or provide continued, long-term support that helps them avoid homelessness or/and
unemployment.
A persons support system may come from several sources, including the family, a professional residential or
day program provider, shelter operators, friends or roommates, professional case managers, churches and
synagogues, and others. Because many patients live with their families, the following discussion frequently
uses the term family. However, this should not be taken to imply that families ought to be the primary support
system.
There are numerous situations in which people with schizophrenia may need help from people in their family or
community. Often, a person with schizophrenia will resist treatment, believing that delusions or hallucinations
are real and that psychiatric help is not required. At times, family or friends may need to take an active role in
having them seen and evaluated by a professional.
The issue of civil rights may enter into an attempt to provide treatment to someone with schizophrenia. Laws
protecting patients from involuntary commitment have become very strict, and families and community
organizations may be frustrated in their efforts to see that a severely mentally ill individual gets needed help.
These laws vary from state to state; generally, when people are dangerous to themselves or others due to a
mental disorder, the police can assist in getting them an emergency psychiatric evaluation and, if necessary,
hospitalization. In some places, staff from a local community mental health center can evaluate an individuals
illness at home if he or she will not voluntarily go in for treatment.

6 TIPS TO HELP FAMILY MEMBERS AND FRIENDS


1. The closest family member or friend should speak-up and be an advocate for the person with
schizophrenia
Sometimes only the family or others close to the person with schizophrenia will be aware of strange behavior
or ideas that the person has expressed. Since patients may not volunteer such information during an
examination, family members or friends should ask to speak with the person evaluating the patient so that all
relevant information can be taken into account.
2. Ensure ongoing compliance with treatment, especially when released from inpatient care.
Ensuring that a person with schizophrenia continues to get treatment after hospitalization is also important. A
patient may discontinue medications or stop going for follow-up treatment, often leading to a return of psychotic
symptoms.
3. Offer strong emotional encouragement and support for continuing treatment.

Encouraging the person to continue treatment and assisting him or her in the treatment process can positively
influence recovery. Without treatment, some people with schizophrenia become so psychotic and disorganized
that they cannot care for their basic needs, such as food, clothing and shelter. All too often, people with severe
mental illnesses such as schizophrenia end up on the streets or in jails, where they rarely receive the kinds of
treatment they need.
4. Know how to respond to bizarre statements or beliefs.
Those close to people with schizophrenia are often unsure of how to respond when patients make statements
that seem strange or are clearly false. For the individual with schizophrenia, the bizarre beliefs or hallucinations
seem quite real they are not just imaginary fantasies. Instead of going along with a persons delusions,
family members or friends can tell the person that they do not see things the same way or do not agree with his
or her conclusions, while acknowledging that things may appear otherwise to the patient.
It is very important not to challenge the persons beliefs or delusions. They are very real to the person who
experiences them, and theres little point in arguing with them about the delusions or false beliefs. Instead,
move the conversation along to areas or topics where you both agree.
5. Keep a record.
It may also be useful for those who know the person with schizophrenia well to keep a record of what types of
symptoms have appeared, what medications (including dosage) have been taken, and what effects various
treatments have had. By knowing what symptoms have been present before, family members may know better
what to look for in the future. Families may even be able to identify some early warning signs of potential
relapses, such as increased withdrawal or changes in sleep patterns, even better and earlier than the patients
themselves. Thus, return of psychosis may be detected early and treatment may prevent a full-blown relapse.
Also, by knowing which medications have helped and which have caused troublesome side effects in the past,
the family can help those treating the patient to find the best treatment more quickly.
6. Help the person set attainable, simple goals in his or her life.
In addition to involvement in seeking help, family, friends and peer groups can provide support and encourage
the person with schizophrenia to regain his or her abilities. It is important that goals be attainable, since a
patient who feels pressured or repeatedly criticized by others will probably experience stress that may lead to a
worsening of symptoms. Like anyone else, people with schizophrenia need to know when they are doing things
right. A positive approach may be helpful and perhaps more effective in the long run than criticism. This advice
applies to everyone who interacts with the person.
Reference:
PsychCentral.com
http://psychcentral.com/lib/helpful-hints-about-schizophrenia-for-family-members-and-others/000706
Brian Smith, MS. (2006). Helpful Hints about Schizophrenia for Family Members and Others.

THROUGH THE MAELSTROM


Diane Froggatt

People with schizophrenia are not a homogeneous group, but people with varying symptoms, varying
behaviours and varying degrees of illness. Similarly, the parents and families of those who have this illness
are not homogeneous and have a vast difference in experiences.
And it is also a matter of difference in experience over time. Families whose relatives have just been
diagnosed with illness face different problems from families who have been caring for relatives for a varied
number of years. Then, each family circumstance is different from parents to siblings to the offspring of those
who are sick, to the economic and even emotional situations in a family brought about by factors other than
illness.
So this topic of being a caregiver is a most complex and varied one. We should not lump all caregivers into
one large basket and attempt to talk with them and give advice as though they were all peas in a pod.
I think that it is because of this difficulty that so many family self-help groups around the world have developed
education and information courses that invite family members to come, to listen and to contribute to the overall
knowledge on the subject as it relates to the very difficult task of loving and caring for a sick relative. The best
of these courses never tries to preach to family member carers or give them the feeling that the powers that be
are imparting the knowledge to them and they must receive it. Rather, these programs are open ended in that
they encourage families to express their opinions, their feelings and their expertisefor they have much
expertise to offer even when they do not at first realize that this is the case.
Families whose relatives are only recently diagnosed are for the most part anxious for knowledge and are often
desperate to meet with others who are going through, or have gone through, similar experiences. This learning
and sharing often saves caregivers from the blame the victim pitfall which is so common when we dont
understand what we are dealing with. Perhaps the best example of this is the belief that their sick relative is
lazy, where in fact apathy and lack of motivation are unfortunately part of this difficult disease even when
someone is on a good regimen of medication and care.
Somewhat later on in the care of their loved one people are looking for answers to the illness, the cure, the
magic bullet that will put everything right. I know of hardly any family that hasnt gone through this stage. We
must remember that this is a real desire on the part of the family and not one to be scorned by those who think
they are in the know. We want the best care for our relative and part of that is seeking to find the best
medication regimen.
What makes the medical care of schizophrenia and like illnesses so difficult is that there is, as yet, no
medication that can be said to be thoroughly effective for all or even most of the symptoms for all of the
sufferers. And so it is important to have a good relationship with the physician who is looking after your relative
and it is most important that this relationship be long term to assure continuing care and to be able to
exchange information with the doctor as the situation and the symptoms change over time. The psychiatrist
should be someone who is particularly working with patients with schizophrenia. The best practitioners
welcome family involvement as an adjunct to their medical care so long as it is respectful and genuine. Quite
often in the early stages of illness and even sometimes in the later stages it is necessary for the doctor to
prescribe a different medication as he learns how your relative is responding. If you take one of the education
courses you will learn all about the various medications that are now prescribed for this illness. Some people
have kept a brief diary of what their relative is on to keep themselves informed, to monitor effects, and to make
sure that a medication that didnt seem to work is not re-prescribed at a later date.
In addition to the medical care and long term treatment of a family member, one of the most important things to
consider is the overall family attitude to the new situation and how this attitude will reflect on how individual
family members behave towards their sick relative. An open and liberal view of mental illness is almost an
essential in being able to care for someone who is this ill - without resentment, without expressing emotional
hurt, showing frustration or many other complex feelings. Some of these feelings have become a sort of

mantra in family self-help and support groups, in that they are the things that families must deal with that are
within them: Shame; Blame; Anger; Denial and Guilt. If you try to overcome these you can be on your way to
accepting your situation no matter how difficult it may be.
The longer that your relative has had schizophrenia and the more difficult the illness has been to control, the
more vulnerable the family caregiver becomes, not only because of the illness but because of the
circumstances it creates. We are advised by our peers to keep up a social life and not to isolate ourselves,
because by staying healthy ourselves we are more useful to our sick loved one. This can be a real challenge.
And for some who are living with their relative without the benefits of other family members to help out it can be
almost impossible. If you can find someone within your support group who can share some of the burden of
everyday care this is a blessing. Some people say I live with schizophrenia every day; why would I spend
time at a support group to be with it more? And I have much sympathy for this view. But I also know that I
have made good friends within the self-help movement, people who I would have not wanted to be without
earlier in my life with schizophrenia.
As we grow older the concerns that we have about what will happen when we are gone become more
significant. Thus we try to prepare for this eventuality in varying ways. What will constitute stability for the
person with schizophrenia when parents are not there? Stability is not only arrived at by a medication that
works but also by a stable life and home. The security given by a permanent place to live cannot be
undervalued, yet this can be most difficult to achieve. Well developed mental health care residences, set up
for the purpose of caring for people with schizophrenia, are in short supply anywhere in the world. Many
groups of families have joined together to set up such residences with the future in mind, but it must be
remembered that these initiatives take a great deal of effort, research, time and funding to establish and
maintain. Other families with no possibility of such a move look at the possibility of renting or buying a home,
such as an apartment, where the person can learn to live somewhat independently of the family in preparation
for the future. In these cases, family members usually arrange for someone to make sure that the place is
cleaned, mail is looked after and that simple-to- prepare food can be bought nearby.
Providing funds for the person can also be difficult both before and after family members are around. In the
latter case, some families rely on the good will of siblings and others to provide economic and social support.
Some are able to set up trust funds that can only be accessed through a reliable trustee so that the funds
cannot be depleted unwisely by the ill person. (Advice on setting up trust funds is a whole article in itself and
cannot be dealt with here!)
Some research says that the effects of schizophrenia wear off as people get older, but this can only truly be
said if the person is cared for over the long term and becomes stabilized through those measures mentioned
above. There are many people who manage to retain employment and to live a relatively normal life, but for the
most part those who have been seriously affected from an early age will need care and some kind of income
support over the long term. This being said, the future for people who develop the illness now is far brighter
than for those who developed it in the past. There are several reasons for this. The general public is far better
educated about mental illness now and realizes that it is indeed a real illness with real symptoms that needs
real care and attention. Families too, as a result of more general knowledge, are better equipped to seek help
early and thus get a better prognosis. The person him/herself may seek help earlier rather than live with the
fear and denial that people lived with in the past. And then the medications, like those for cancer and other
serious conditions, are improving fairly rapidly as research delineates the basis for medications that will be
more effective. Research for finding the causes is also moving forward.
Looking after a person with schizophrenia is a long term project and one that takes a number of years for
families, including the person who is ill, to adapt to. I have often tried to put myself in the place of my 19-yearold son when he developed schizophrenia: how bewildered he would have been, how scared, and how
determined to fight it. People giving the care must remember that their suffering is minor compared to the
person with the illness and that we must retain our compassion despite all the topsy-turvy emotions and
situations that afflict us.
For myself and my family including our son, I feel we have come through the maelstrom. Over many years
things have gotten better millimetre by millimetre; he has not suffered a psychotic episode in 20 years. He has

lived in a residence not too far from the family home for the same number of years. He spends time with our
family on a regular basis. He is able to socialize with our friends in a quiet way but always with humour and
enjoyment. Recently, I have noticed that while we are caring for him, he is also caring for us, doing some of
the heavy lifting as we grow old. That is as it should be and we appreciate that he still loves and trusts us. He
seems to take a pride in caring for us in some measure. We love him dearly.
Diane Froggatt has been a board member of WFMH and Executive Director of the World Fellowship for Schizophrenia
before it amalgamated with WFMH. She lives in Toronto, Canada and is the mother of a son with schizophrenia.

HELPING WITH PAPERWORK AND FINANCIAL ISSUES


This article considers the general financial considerations that can accompany mental illness. Family care
often extends beyond support for daily living, and involves dealing with complicated financial matters.
Financial issues differ enormously in countries around the world and from family to family. In most cases,
however, it affects the familys overall budget. Sometimes the main breadwinner can no longer work;
sometimes an individual needs financial support; sometimes a caregivers ability to work is affected.
In many parts of the world there is no national structure of financial or health care support for people with
mental disorders, and families provide support from their own resources as best they can. There is no paper
trail. When a person is unable to work and has no income the family often provides complete support,
including housing, with a minimum of outside help.
This article focuses on a different situation that of families living in countries where various forms of care and
support are available to a family member with mental illness, but where the health care system, taxation
system and welfare/social support system can generate records and application forms, tax forms and disability
allowance forms. Quite often people with a mental disorder find it difficult to deal with the paperwork. They
can fail to file forms correctly or on time, and can fall into arrears with payments of one kind or another,
generating demand letters or phone calls about financial issues.
In cases of severe mental illness family members or caregivers often have to deal with large amounts of
paperwork. Circumstances vary a great deal across cultures and in individual experience. Sometimes a
person rejects help and sees it as an intrusion into private affairs. But where assistance is needed and the ill
person is willing to accept it, many caregivers find themselves trying to help with financial matters. They can
find that assisting with another persons financial situation takes up a large amount of time, especially in the
beginning.
If the person being helped is young, a family caregiver may already have a fairly clear idea of the persons
financial arrangements. Whether the person lives at home, in rented accommodation, or at college, the family
has probably already been involved in providing routine financial support and knows about the persons regular
budget and financial obligations. Sometimes, though, they are surprised to find that the person has indulged in
an unwise spending binge.
Young people attending a college or university who have taken out student loans to pay fees may incur serious
debt problems if they develop a mental disorder while attending the educational establishment. The same
applies if they become ill after graduating and cannot workthey will be unable to make payments on their
loans, which can amount to considerable sums. This can be a matter of considerable anxiety to the person
and to the family, which can become involved in negotiations with the loan provider. (A Canadian colleague
reports that a local schizophrenia society had a crisis worker who was able to advise the young person and the
family, and was willing to discuss the loan with the university. The assistance was very helpful.)
There are circumstances where caregivers become involved in helping a person whose illness has occurred
later in life after a person has been living independently for a while, when financial matters can be more
complicated. Help might be required with an array of items such as bank accounts, mortgage or rent payments
in arrears, bills for services (medical bills, medical insurance, phone service, heating bills, etc.), tax returns and
applications for disability benefits.
Some people with mental disorders may have been able to manage their finances without any assistance until
a crisis, but by the time a caregiver becomes involved, matters may have been unraveling for a while. Bills
may have been ignored. It can take a lot of patience to establish what the persons expenses are, what money
is available, and to find out if there are arrears. Debt counseling services, if available, can be helpful.
Privacy concerns can be a complication in some countries. In Asia the family is expected to be involved, and
may even have obligations about payments. In other countries regulations may not permit a medical or
financial office to discuss the persons affairs with a family member without authorization. The caregiver then
needs to obtain authorization to explain the reason for problems that have arisen, and to try to discuss

extended payment schedules for arrears. In those instances it may be sufficient for the account holder to give
authorization by phone, or a caregiver could accompany the person to the office for a discussion with staff or a
supervisor in fact, providing transport can be a key support. In certain situations a caregiver may have to get
legal authorization in order to become involved.
Often the office representatives dealing with arrears are pleased to find that someone wants to work with them
to try to find a solution; if authorization is provided, they can be extremely helpful and may be able to offer
reduced payments. They will emphasize the need to stay in touch with them the very thing the ill person
might find difficult. In other cases, unfortunately, the office representative may know little about mental
illnesses, may have little understanding about why problems have arisen, or may not be allowed to offer help.
Sometimes no resolution is possible, leaving the caregiver with continued anxiety about the situation after
having invested considerable time to try to deal with it.
In countries where disability support is available, applying for it may be particularly frustrating. In these times
of austerity in many countries, government departments handling welfare payments want to reduce fraud and
keep limits on total spending, and they can be understaffed to meet demand. Applications for disability
benefits are subject to strict scrutiny and may involve delays, an initial rejection and a complicated appeals
process. A rejection requiring an applicant to enter a lengthy appeals process could leave the person with a
considerably reduced income (and increased stress).
In situations like this a caregiver can provide invaluable assistance by helping to collect the documents needed
to support an initial benefits application, gathering additional documents if an appeal is needed, making sure
that deadlines are met, and helping the person involved get to required appointments on time. Working
through the process will need coordination with the persons doctor, social worker and/or mental health team
(which may require consent from the person involved), and transport.
Sometimes even getting the basic information needed can be hard. When contacting various agencies or
government departments, information from one can differ from information from another; then the caregiver
needs to try to verify it. Advice and information from different social assistance agencies is not necessarily
well coordinated.
In addition to all the other help he or she gives, an effective caregiver needs to become an office manager,
maintaining records and information over time. The task can feel overwhelming. It can be useful for the family
to keep some kind of log book or binder containing details of medical care and dealings with agencies,
departments, commercial companies and social support groups. This should include copies of medical records
if available; notes and dates about appointments and medication; copies of application forms; copies of
correspondence; bills and demands; and details of contact information for everyone who has become involved
with the person and the family in matters of care and support. The appearance of organization is something
that can be useful in dealing with authorities.
For some things caregivers need to have a short-term horizon, dealing with emergencies or immediate
financial problems, but they also need to have a long-term perspective in mind. As they age, caregivers may
not be able to provide as much help to a mentally ill person as they once did. They may eventually require
help themselves. They may outlive the person they care for. Caregivers should give some thought to longterm planning about living arrangements and financial matters. This should be discussed with other family
members. It can be helpful to talk with people in similar caregiving situations, to contact relevant welfare
advice agencies, and nowadays the Internet can be a source of information. Specialist legal advice can be
expensive, but appropriate legal arrangements can protect a mentally ill persons financial situation after the
caregivers death.
Dealing with paperwork is not often mentioned when caregiving is discussed, but in some countries it can be
an important responsibility demanding considerable amounts of time.

OLDER ADULTS WITH SCHIZOPHRENIA AND THEIR CAREGIVERS


AN OFTEN INVISIBLE POPULATION
Victor Molinari, PhD, ABPP; Rosalyn Roker, MBA, MA; Deborah DiGilio, MPH

Often when we think of Serious Mental Illness (SMI) including schizophrenia, we do not think of older
individuals. This exclusion is also apparent in the scientific literature as over 90% of the published papers on
schizophrenia have ignored older persons with this disorder (Broadway & Mintzer, 2007). Although most older
adults with schizophrenia experience onset of the illness at early ages, usually in the second or third decade of
life (Wetherell & Jeste, 2004), approximately 23.5% of patients with schizophrenia developed the illness after
the age of 40, and roughly 4% of persons with schizophrenia have onset after the age of 60. Community
prevalence estimates for schizophrenia in individuals over the age of 65, ranges from only 0.1% to 0.5%
(Broadway & Mintzer, 2007). This number, as well as the number of older adults with all mental disorders, is
expected to increase as the older population grows, and as cohorts of middle-aged and younger individuals
who are receptive to psychological services move into old age (Karel, Gatz & Smyer, 2012).
Unfortunately, inaccurate perceptions and stereotypes of aging can lead both health care providers and
families of individuals with schizophrenia to have lower expectations for improvement among these individuals.
Quite the opposite is true. Research on older adults with schizophrenia reveals that positive symptoms of
schizophrenia do abate with age, use of illicit substances becomes less frequent, and mental health may
improve (Depp , Loughran, Vahis, & Molinari, 2010; Harvey, Reichenberg, & Bowie, 2006).
However, the stressful lives of those with schizophrenia takes its inevitable toll, especially due to
hospitalizations for acute psychotic episodes, ingesting of multiple psychiatric medications, substance misuse,
greater victimization, frequent incarcerations, and potential for homelessness. It is no wonder that those with
schizophrenias health status is often compromised at a relatively early age, and that they live 12-15 years less
than their age matched peers with no SMI (Crump, Winkleby, Sundquist, & Sundquist, 2013).
The majority of older adults with schizophrenia live in community settings, with approximately one-third to onehalf residing with family members (Cummings & Kropf, 2011; Lefley, 1987; Goldstein & Caton, 1983; Tessler &
Goldman, 1982). This poses challenges for caregivers, as many of them do not fully comprehend the
complexity of SMI and are ill-equipped to assist older adults with symptom management. For optimal mental
and physical health outcomes for both older adults with schizophrenia and their caregivers, caregivers need to
be knowledgeable about where to seek treatment and which specific interventions are culturally appropriate,
evidenced based, and available within the community in which they reside.
Interventions for Older Adults with Schizophrenia
Older adults with SMI do benefit from both psychological and/or pharmacological interventions. Psychosocial
interventions such as cognitive behavioral social skills training and Functional Adaptation Skills Training
(FAST) are efficacious in improving functioning in older adults with schizophrenia (Jeste & Maglione, 2013).
Adults aged 40 and over who completed this 24-week behavioral intervention that targeted six areas of
everyday functioning, maintained improved living and social skills up to 3-months after completing the
intervention (Patterson, Mausbach, McKibbin, Goldman, Bucardo, & Jeste, 2006). Mueser et al. (2010)
developed Helping Older People Experience Success (HOPES), a program designed to reduce long-term
medical burden and to improve psychosocial functioning in older adults with SMI living in the community. By
adding a year-long social skills training component to the typical pharmacotherapy and case management
regimen, older participants (aged 50+) with SMI improved more in social skills, community functioning,
negative symptoms, self-efficacy, and recreation. These improvements were sustained for at least three years
(Bartels, et al., in press). The authors conclude that psychosocial rehabilitation (including health management
and skills training) that is integrated with case coordination can benefit older adults with SMI who have longstanding functional impairments. Another program, Assertive Community Treatment (ACT) teaches living skills,
and provides assistance with housing, family contact, medical care and medications, finances, counseling, and
vocational rehabilitation for those with SMI. The services are provided 24 hours a day/7 days a week (wraparound model). A recent randomized control trial tested the effectiveness of ACT for 62 older outpatients (60+

years) with SMI who were difficult to engage in psychiatric treatment. Relative to patients with treatment as
usual, less older patients in ACT dropped out and more patients had a first treatment contact within three
months. However, there were no differences found in mental health care use or psychosocial functioning
scores (Stobbe et al., 2014).
It is also true that older adults with histories of chronic, SMI, including schizophrenia may benefit from
providers with expertise in aging issues as they may experience additional age-related challenges such as
cognitive impairment, medical comorbidity, polypharmacy, and end-of-life issues. In addition, psychotic
symptoms associated with dementia are evident in up to 40% of patients, and the presence of psychosis
predicts more rapid cognitive decline and institutionalization (Depp, et al., 2010). A provider is thereby required
who is skilled in differentiating among the medical and psychiatric causes of hallucinations and delusions in
schizophrenia versus dementia.
Unfortunately, in the United States, community programs often do not target older adults with schizophrenia,
and assisted living facilities are not well regulated regarding mental health concerns. Even in the more
regulated nursing home industry, training is sorely needed. Those with SMI make up approximately 10% of the
nursing home residents (Becker & Mehra, 2005). These residents have their unique constellation of mental
health needs and are unfortunately lumped together with those who have dementia with the expectation for
cognitive decline. Nursing home residents with schizophrenia are more likely to be younger and male, and staff
fear that they may behave aggressively towards frail women. The staff of the typical nursing home recognizes
the need and desire more training in the mental health arena (Molinari et al., 2008). A recent online training
program showed positive results for formal caregivers in changing attitudes, improving knowledge, and gaining
self-efficacy in dealing with mental illness in a long term setting (Irvine, Billow, Bourgeois & Seeley, 2013).
Education and supervised training of staff in residential care settings may be keys to improved care for this
vulnerable group.
Interventions for Informal (Family) Caregivers of Older Adults with Schizophrenia
Twenty-five percent of caregivers of adults 50 and older report that the care recipient they help needs care
because of emotional/mental health issues (National Alliance for Caregiving, 2009). Family caregivers
frequently assume supportive functions for an older adult with SMI because of the scarcity of community based
housing alternatives and mental health services (Lefley, 2009). Indeed, individuals with schizophrenia who live
with informal caregivers are less likely to have been hospitalized during the previous year compared to those
without informal caregivers, perhaps because of the support that they receive (Tucker, Barker, & Gregoire,
1998). Assuming this responsibility doesn't come without cost, however. It has been reported that spouses of
patients with mental illness are at high risk for developing a depressive disorder (Wittmund, Wilms, Mory, &
Angermeyer, 2002).
Research on ethnic differences in caregivers duties and burdens related to caring for family members with SMI
is sparse. Similar to findings reported by family carers of older adults with other medical conditions, ethnic
minorities report less feelings of burden and are more accepting of their caregiving role for family members
with SMI compared to Whites (Guarnaccia & Parra, 1996; Horwitz & Reinhard, 1995). Although ethnic
minorities are more apt to embrace the role of caregiver, they are less likely than Whites to seek assistance
from mental health professionals (Guarnaccia & Parra, 1996; Neighbors et al., 2008). Levels of understanding
and perceptions of need vary among these groups. Primarily because receptivity is a major factor to
successful outcomes, in order to engage and retain ethnic minority caregivers in mental health interventions a
one size fits all approach should be avoided.
An online survey of family caregivers of older adults with SMI found four major areas of caregiver concern for
future planning: worry that the health of the care recipient will get worse; worry that aging caregivers will be
unable to sustain support over time; concern that social support will become less available for the loved one
with SMI; and, increasing financial burden of care. Unfortunately, despite these legitimate concerns, few
caregivers complete plans for future caregiving, and often they had not even discussed future caregiving with
others (Corsentino, Molinari, Gum, Roscoe, & Mills, 2008). This may be understandable given the amount of
day-to-day effort that is expended by the caregivers of individuals with SMI they may have little time to spend
thinking about the future in a concentrated way.

There is encouraging evidence for evidence-based practice in addressing the concerns and mental health
needs of family caregivers of individuals with schizophrenia. Older family caregivers of adult patients with
schizophrenia who completed a 10-session problem-solving intervention, consisting of psycho-education and
information about schizophrenia, cognitive restructuring and stress management, behavior management, and
planning to meet the future needs of the care recipient showed improved emotional well-being and life
satisfaction, and reduced feelings of burden (Kauffman, Scogin, MacNeil, Leeper, & Wimberly, 2010). Family
psycho-education also proved effective in reducing caregiver burden among families in a Latin American
country (Gutirrez-Maldonado & Caqueo-Urzar, 2007). Counseling services for family caregivers of individuals
with schizophrenia were beneficial in allowing caregivers to express their feelings and concerns, to learn more
about their loved ones illness, and to obtain guidance and advice related to caregiver issues (Bloch, Szmukler,
Herrman, Benson, & Colussa, 1995). The National Alliance for the Mentally Ill (NAMI) has sponsored The
Planned Lifetime Assistance Network (PLAN) to provide future care planning services which has yielded
positive outcomes including decreased family stress, improved family relationships, and allowing parents to
focus on their own lifespan needs (Obloy & Hutcheson, 2002). Family caregivers of persons with SMI can also
benefit from respite care. Respite services are widely utilized by caregivers of dementia patients and have
proven to significantly improve the caregivers quality of life; however, while these services are desired and
needed by caregivers of individuals with SMI they are not as prevalent for this population (Jeon, Brodaty, &
Chesterson, 2004).
There are also a number of excellent online resources for caregivers of individuals with mental disorders. The
American Psychological Associations Family Caregivers Briefcase, a 166 web page resource that contains
facts, strategies for involving caregivers, interventions, and assessment tools for caregivers and care recipients
across the lifespan, including for caregivers of individuals with mental disorders. One section of the Briefcase
provides links to resources available for families and caregivers of individuals with SMI.
In closing, it should be noted that experts in schizophrenia who work with older adults often adhere to the
principles of the Recovery Movement, maintaining the belief that we have been unnecessarily pessimistic in
our outlook regarding the developmental course of schizophrenia. All health care professionals should
encourage self-determination, honoring the rights of those with schizophrenia to make their own life decisions,
to define their own quality of life criteria, and to live in the least restrictive environment (APA, 2009). In addition,
health care providers and family caregivers must be strong advocates for government and organizational
policies supportive of older individuals with SMI. The APA Family Caregiver Briefcase includes profiles of
psychologists involved in such advocacy efforts.
We have moved in a positive direction in the last forty years from when many health professionals regarded
family members of individuals with schizophrenia and bipolar disorder as harmful agents who may have had a
role in the development of these chronic illnesses (APA, 2011). However, there continues to be a significant
need for education to counter the belief that schizophrenia is caused by family behavior, and for increased
availability of evidence-based programs to support family caregivers of older adults with schizophrenia and
other serious mental illness.
Victor Molinari, PhD, ABPP and Rosalyn Roker, MBA, MA are from the School of Aging Studies, University of South
Florida; Deborah DiGilio, MPH, is from the American Psychological Associations Office on Aging.
References
American Psychological Association (2011). Family Caregivers Briefcase. Retrieved from
http://www.apa.org/pi/about/publications/caregivers/index.aspx
American Psychological Association (2009). Resolution on APA Endorsement of the Concept of
Recovery for People with Serious Mental Illness. Retrieved from
http://www.apa.org/about/policy/chapter-10b.aspx#endorsement
Becker, M., & Mehra, S. (2005). Serious Mental Illness in Florida nursing homes: A study of resident,
facility, cost, and quality of care characteristics. Technical report presented to the Florida for
Health Care Administration.
Bartels, S.J., Pratt, S.I., Mueser, K.T., Forester, B.P., Cather, C., Swain, K., Xie, H., Bird, B., & Feldman,
J. (in press). Three-year outcomes of integrated skills training and health management for older
illness: The HOPES study. American Journal of Geriatric Psychiatry.

adults with serious mental

Bloch, S., Szmukler, G. I., Herrman, H., Benson, A. N. N., & Colussa, S. (1995). Counseling caregivers of relatives with schizophrenia:
Themes, interventions, and caveats. Family Process, 34(4), 413-425. doi: 10.1111/j.1545-5300.1995.00413.x
Broadway, J., & Mintzer, J. (2007). The Many Faces of Psychosis in the Elderly. Current Opinion in Psychiatry. 20(6), 551-558.
Corsentino, E.A., Molinari, V., Gum, A.M., Roscoe, L. A., & Mills. W.L. (2008). Family caregivers'
future planning for younger and older adults with serious mental illness. Journal of Applied
Gerontology, 27(4), 466-485. doi: 10.1177/0733464808315290
Crump, C., Winkleby, M. A., Sundquist, K., & Sundquist, J. (2013). Comorbidities and mortality in persons with schizophrenia: a
Swedish national cohort study. American Journal of Psychiatry, 170(3), 324-333. doi:10.1176/appi.ajp.2012.12050599
Cummings, S. M., & Kropf, N. P. (2011). Aging with severe mental illness: Challenges and treatments. Journal of Gerontological Social
Work, 54, 175-118. doi: 10.1080/01634372.2010.538815
Depp, C., Loughran, C., Vahia, I., & Molinari, V. (2010). Assessing psychosis in acute and chronically
mentally ill older adults. In P. Lichtenberg (Ed.), Handbook of Assessment in Clinical
Gerontology (2nd ed.) (pp.123-154). New York: John Wiley & Sons. doi:10.1016/B978-0-12-374961-1.10005-3
Guarnaccia, P. J., & Parra, P. (1996). Ethnicity, social status, and families' experiences of caring for a mentally ill family member.
Community Mental Health Journal, 32(3), 243-260. doi: 10.1007/BF02249426
Gutirrez-Maldonado, J., & Caqueo-Urzar, A. (2007). Effectiveness of a psycho-educational intervention for reducing burden in latin
american families of patients with schizophrenia. Quality of Life Research, 16(5), 739-747. doi:10.1007/s11136-007-9173-9
Goldstein, J. M., & Caton, C. L. (1983). The effects of the community environment on chronic psychiatric patients. Psychological
Medicine, 13(01), 193-199.
Harvey, P. D. (2005). Schizophrenia in late life. Aging effects on symptoms and course of
illness. Washington DC: American Psychological Association. doi:10.1037/10873-000
Horwitz, A. V., & Reinhard, S. C. (1995). Ethnic differences in caregiving duties and burdens among parents and siblings of persons
with severe mental illnesses. Journal of Health and Social Behavior, 36(2), 138-150. doi: 10.2307/2137221
Irvine, A. B., Billow, M. B., Bourgeois, M., & Seeley, J. R. (2012). Mental illness training for long term
care staff. Journal of the American Medical Directors Association, 13, 81,e7-81.e13. doi:
0.1016/j.jamda.2011.01.015
Jeon, Y. H., Brodaty, H., & Chesterson, J. (2005). Respite care for caregivers and people with severe
mental illness: literature review. Journal of Advanced Nursing, 49(3), 297-306. doi:
10.1111/j.1365-2648.2004.03287.x
Jeste, D. V., & Maglione, J. E. (2013). Treating older adults with schizophrenia: Challenges
and opportunities. Schizophrenia Bulletin, 39 (5), 966-968.
Karel, M. J., Gatz, M. & Smyer, M. A. (2012). Aging and mental health in the decade ahead: What
psychologists need to know. American Psychologist, 67, 184-198. doi:10.1037/a0025393
Kaufman, A. V., Scogin, F., MacNeil, G., Leeper, J., & Wimberly, J. (2010). Helping aging parents of adult children with serious mental
illness. Journal of Social Service Research, 36(5), 445-459.
Lefley, H. P. (1987). Aging parents as caregivers of mentally ill adults children: An emerging social problem. Hospital and Community
Psychiatry, 38(10), 1063-1070.
Lefley, H. P. (2009). Family psychoeducation for serious mental illness. New York: Oxford University Press.
Molinari, V., Chiriboga, D., Branch, L., Cho, S., Turner, K., Guo, J. & Hyer, K. (2010). Provision of
psychopharmacological services in nursing homes. Journals of Gerontology: Psychological
Sciences and Social Sciences,
65(1), 57-60. doi: 10.1093/geronb/gbp080
Molinari, V., Hedgecock, D., Branch, L. Brown, L., & Hyer, K. (2009). Mental health services in nursing homes: A survey of Florida
nursing home administrative personnel. Aging & Mental Health, 13(3), 477-486. doi: 10.1080/13607860802607280
Molinari, V., Merritt, S., Mills, W., Chiriboga, D., Conboy, A., Hyer, K., & Becker, M. (2008). Serious
mental illness in Florida nursing homes: Need for training. Gerontology & Geriatrics Education,
29(1), 66-83. doi: 10.1080/02701960802074321
Mueser, K.T., Pratt, S.I., Bartels, S.J., Swain, K., Forester, B., Cather, C., & Feldman, J.(2010).
Randomized trial of social rehabilitation and integrated health care for older people with severe
mental illness. Journal of Consulting and Clinical Psychology,78(4), 561-73. doi: 0.1037/a0019629.
Neighbors, H. W., Woodward, A. T., Bullard, K. M., Ford, B. C., Taylor, R. J., & Jackson, J. S. (2008). Mental health service use among
older African Americans: the National Survey of American Life. The American journal of geriatric psychiatry, 16(12), 948.
Obloy, C., & Hutcheson, S. (2002). Planned Lifetime Assistance Network: A new service model with
promising results. Psychiatric Rehabilitation Journal, 25(4), 409-412.
Patterson, T. L., Mausbach, B. T., McKibbin, C., Goldman, S., Bucardo, J., & Jeste, D. V. (2006). Functional Adaptation Skills Training
(FAST): A randomized trial of a psychosocial intervention for middle-aged and older patients with chronic psychotic disorders.
Schizophrenia Research, 86(13), 291-299. doi: http://dx.doi.org/10.1016/j.schres.2006.05.017
Stobbe, J., Wierdsma, A., Kok, R. M., Kroon, H., Roosenschoon, B., Depla, M., & Mulder, C. L. (2014). The effectiveness of assertive
community treatment for elderly patients with severe mental illness: A randomized controlled trial. BMC Psychiatry, 14-42, doi:
10.1186/1471-244X-14-42.
Tessler, R. C., & Goldman, H. H. (1982). The chronically mentally ill: Assessing community support programs. Cambridge, MA:
Ballinger.
Tucker, C., Barker, A., & Gregoire, A. (1998). Living with schizophrenia: Caring for a person with a
severe mental illness. Social Psychiatry and Psychiatric Epidemiology, 33(7), 305-309.
Wetherell, J.L., & Jeste, D. V. (2004). Older Adults With Schizophrenia: Patients are living longer and
gaining researchers attention. Retrieved from
http://web.stanford.edu/group/usvh/stanford/misc/Schizophrenia%202.pdf
Wittmund, B.,Wilms, H. U., Mory, C., & Angermeyer, M. C. (2002). Depressive disorders in spouses of
mentally ill patients. Social Psychiatry and Psychiatric Epidemiology, 37(4), 177-182.

CARING FOR CAREGIVERS: TAKING CARE OF YOURSELF


excerpt from the WFMH Caring for the Caregiver document

Caregivers across the world, who are often unrecognized and under-supported, are deeply and personally
impacted by the care they provide. Despite the burdens they shoulder, many caregivers report enormous
positive feelings about the care they provide. 1 Caregivers need resources and support to sustain this loving
and valuable care of those with neurological disorders.
What do Caregivers Need?
The ten principles outlined in the box to the right were
developed by EuroFamCare to assist governments and
NGOs all over the world in developing programs to support
caregivers. These principles directly outline some of the
needs of caregivers, such as time off, support, and
information. You may share some of the same needs. 2
As a caregiver, you need a plan. A Caring for the
Caregiver Plan, described below, will help you to both
navigate life during this uncertain time, and will help to
maintain good emotional and physical health. The Caregiver
Principles outlined to the right should be incorporated your
own Caring for the Caregiver Plan. While it may take some
work upfront, a C
Caring for the Caregiver Plan, will set the
stage for a more positive caregiving experience.
This Caring for the Caregiver Plan should have three parts:

Coping with day-to-day demands

Creating a community of carers to support yourself

Caring for your mental health

A.

Caregiver Principles:

Recognition

Social inclusion

Equality of opportunity

Choice

Information

Support

Time off

Compatibility of care and


employment

Health promotion and


protection

Financial security

COPING WITH THE DAY-TO-DAY DEMANDS: DEFINING AND GETTING THE HELP YOU NEED

In order to cope with the day-to-day demands of caregiving, you will need help. There are several steps in
asking for and accepting help. These steps include: understanding why it is okay to get help; defining the
help you need; and finding resources for help. If you are a caregiver caring for a family member(s), holding
a family meeting at the outset of caregiving is crucial to not only your emotional and physical health, but the
overall success you will have in providing care for a family member.
Step 1: Understand That it is Okay to Get Help
Often, as a carer, you may hear people ask how they can help; however, few carers actually follow-up on these
offers of help. Just as paid workers get a lunch break or a week-long vacation, you too need these necessary
and built-in breaks in care. In order to maintain good emotional and physical health, you must ask for and
accept help, even if you dont think you need it. Caregivers may often have these feelings about getting help:

Its not okay to ask for help


Remember that everyone needs help at times. Its okay to ask for help and to take time for yourself.

I feel guilty getting help


It is all right to leave the person in your care with someone else; just as paid workers get a regular
holiday, you too need time off to care for yourself.

I dont think I can get help

Though you might think that no one will help even if you ask, try. Seek out resources in your
community, and ask family and friends.

If my family wont even help, maybe I dont really need it.


Understand that some family members wont be willing to help; each family member has a different
family history that dictates their emotional capacity and willingness to provide help.

Understand that asking for help is a sign of strength and not of weakness. It is okay to get help, and likely, you
can get the help you need. Step one is to clearly define the help you need; the next section describes in detail
how to define the help you need.
Step 2: Define the Help you Need
Defining the help you need is a critical step, and it may be difficult at first. Recognize that caregiving, like all
jobs, is made up of lots of individual tasks, not all of which are of the same importance. A critical piece is to
write down all that you do, even the little things.
1. List all of your care-giving related tasks that need to get done during a typical week.
2. Group your list into categories: personal care for your loved one, transportation, household chores,
and healthcare activities.
3. List your care-giving worries (for example, who will care for my loved one if I get sick? What
will happen to my loved one if they experience psychosis when I am not available?)
4. Show your list to others (e.g. a family member, good friend, your health care provider or nurse, etc.)
to generate more ideas and insights. The intent is first to get comfortable with the idea of talking about
your need for assistance, and hopefully get some encouragement and good ideas in the process.
5. Finally do it! Take a deep breath and actually ask someone to help with one of the tasks on your
list, or ask for guidance in resolving your most persistent worry. Start with something small, but start!3
Though getting help takes work (and energy you might not have right now), it is worth doing. Keep in mind that
the goal of getting help is better care for your loved one and for yourself.
Step 3: Seek out Resources for Help in Your Community
Caregiver support programs vary from country to country, culture to culture. In some countries, families are
now legally required to provide for the welfare of elders (e.g. Latin America). Recent laws in the UK give
caregivers the right to request needs assessments, supportive services, and flexible work schedules. Other
countries provide cash payments or carer allowances (e.g. Australia, Ireland, Israel, China). Many countries
are still in the early stages of defining the challenges of caregiving, with progress and solutions influenced by
internal resources and cultural traditions.
In addition, some programs designed to serve the care recipient can also help the caregiver (e.g. meals being
brought in, medical alert programs, chore or homemaker services, adult day care or respite care). Check with
your healthcare provider to determine the types of programs, information, assistance, training and respite care
offered by governmental and non-governmental organizations in your area. Good sources for this information
also include the internet and by contacting local, regional and state governments, as well as national programs.
You can also find additional resources from the informal support network you may have already established.
For example, if you, or other extended family member like a mother or father, belong to a church, senior
center, or service club, these organizations are often looking for ways to help others. Organizational
newsletters are a great place to advertise your need for help.
Finally, while many services are available through local government agencies, service organizations, or faithbased organizations, employers are beginning to implement workplace support programs as one way to
mitigate the impact that caregiving can have on workers.

Summary: Because the needs of those with neurological disorders are likely to be complex and constantly
changing, caregivers need a range of support services and programs to remain physically and emotionally
healthy. Utilizing these resources where available will allow you to be able to maintain your role as a
caregiver, whether providing care at home or assisting with out-of-home care. Some basic caregiver support
services available in many areas include information, counseling, and support groups. Caregivers should take
advantage of these support services; research has shown that using these services keeps caregivers healthier
and in their caregiving roles longer, and with less stress and greater satisfaction.

SPECIAL SECTION FOR FAMILY CAREGIVERS: THE IMPORTANCE OF FAMILY MEETINGS


Providing care for a family member with a neurological or other disorder is emotional in and of itself. Each
family member has a long history of with the family, and likely carries conflicting expectations of what each
family member should do with regard to caregiving. There is also often anger at things that have happened in
the past, which may interfere with family members willingness to help share the caregiving tasks.
Holding family meetings is important in discussing and understanding everyones perspective and availability to
help in the care. Research has shown that family meetings can reduce depressive symptoms in caregivers
and result in postponement of institutionalization. 4
Though difficult, the caregiver meetings should focus on current caregiving needs, rather than dwell on past
conflicts. If this is not possible, a trained professional may be hired to lead the family meetings to be sure that a
successful caregiving routine is established, and anger and resentment are not deepened. Failure to find a
neutral party to assist in developing a fair caregiving plan may result in divisive actions among family members.
Talk Early. If you are caring for a family member with a neurological disorder, it is essential that you hold a
family meeting at the outset of the care giving situation. Talking about the caregiving situation in honest
and open terms will allow everyone to contribute to developing a plan to provide the best care for your
loved one, and in a way that maintains the primary caregivers physical and emotional health.
Listen Carefully. A family meeting is an important opportunity for everyone to best hear and understand
the current caregiving demands, to identify potential problems and solutions, and to work through defining
and sharing caregiving tasks. The caregiver needs should be outlined (see Define the Help you Need,
above) by the group. In addition, family members who are out-of-town should be included via phone to
insure that they understand the current caregiving situation (and that the caregiving needs may change
while they are away). Listen to each other and determine the best fit for the caregiving tasks you have
defined. Be sure to also listen to what the person being cared for has to say. Make sure that each person
hears the feelings of all involved. Develop a written plan listing what each person will do and when he or
she will do it; utilizing an online website (e.g. Lotsa Helping Hands), discussed below in Section B, will
facilitate the sharing of tasks.
Talk often. It will take more than one meeting to establish and maintain a good caregiving routine.
Schedule a family meeting at least several times per year; this way, if a crisis arises, you are all more likely
to all be on the same page. If the emotional toll of caregiving makes it difficult for you as the primary
caregiver to hold a family meeting, contact your healthcare provider for the names of those who can help.
A social worker, case manager, counselor, trained facilitator or mediator, or member of the clergy trained in
family counseling can help bring the family together to insure that the primary caregiving burden does not
fall too heavily on one family member, endangering their emotional and physical health.

B.

SUPPORT YOURSELF: CREATING A COMMUNITY OF CARERS

Hopefully, you are surrounded by many family and friends who can offer help. Having this help at hand will be
invaluable to you. But how to coordinate this help? One way caregivers can coordinate offers of help is by
using a web-based caregiving coordination service, such as Lotsa Helping Hands.
Lotsa Helping Hands is a web-based caregiving coordination service that allows family, friends, neighbors and
colleagues to create a community of caregivers to assist with daily tasks. This service was developed in
partnership with dozens of national nonprofit organizations in the U.S., and helps to bring together community
members who can help caregivers with meals, rides, errands, childcare and other activities of daily living.
Each community you create includes an easy-to-use group calendar for scheduling tasks such as coverage or
transportation to medical appointments, a platform for securely sharing vital medical, financial, and legal
information with designated family members, and customizable sections for posting photos, well wishes, blogs,
journals, and messages.
Now when someone offers to help, ask for their email address; from there, the system takes over and allows
people to sign up and start helping.
Another more low-tech way to achieve a similar goal creating a community of carers is by using paper
calendars to record scheduled doctors appointments and other routine, necessary tasks that must be done
(e.g. meals, laundry), and distributing these on a monthly basis to all those who offer to help. During the first
week of each month, distribute these calendars and collate responses, assigning tasks for that month.
C.

PROTECT YOURSELF: CARING FOR YOUR MENTAL HEALTH

Without good emotional health, the day-to-day tasks of caregiving of managing doctors appointments,
preparing meals and handling finances, perhaps on top of an already-demanding worklife can lead to stress,
and even perhaps depression or anxiety. You may be so busy caring for the person with a neurological
disorder you dont have time to think about caring for your own emotional health.
As a caregiver, you will need great emotional resilience as you meet the increasing caregiving demands of a
loved one or friend with a neurological disorder under your care. Taking care of your emotional health means
first and foremost, managing the stress of caregiving so that you can avoid caregiver burnout.
WATCH FOR CAREGIVER BURNOUT
As the neurological disorder progresses, the carers role can become more involved. It is important to take
steps to avoid becoming burned out as the disorder progresses. Below are some tips to help you along the
way.
1. Set boundaries. As a carer you have enough to do already. Dont feel like you have to say yes to the
requests of others.
2. Set realistic limits. Accept that you cannot do it all. No one should expect you to. You should
not expect it of yourself.
3. Delegate responsibility and create a care team. If you have others around you who are willing
to help, take advantage of it.
4. Seek and accept help. If you have realistic limits youll know when it is time to ask for help
ask before you find yourself in a crisis. If someone offers help, take advantage of it.
5. Celebrate success. Celebrate your own success, no matter how seemingly small. Celebrate the
successes of your loved one.
6. Take breaks. Taking periodic breaks to do something that gives you enjoyment and peace, even if its
only a 10-minute break, can help recharge you for the rest of the day.

7.

Utilize respite care and adult day care. Accept that getting away from the care-giving situation helps
you and your loved one. If you feel guilty about leaving your loved one talk your feelings over with
someone.

8.

Identify what external resources are available, including carers training courses and physical
aids. Resources for people dealing with neurological disorders day-to-day will vary from country to
country.5

Caring for a person with a neurological disorder will require significant time and effort. You might feel
extremely sad, and even mad that the disorder has changed the person and/or your family life. These feelings
are normal; seek out others, via a peer support group, or through counseling, who can understand your
feelings and situation. Peer support groups or counseling will help to lessen sadness, anxiety, or anger that
you may be feeling.
WATCH FOR SIGNS OF ANXIETY AND DEPRESSION
Many caregivers become depressed or anxious over the course of caring for someone with a neurological
disorder. The increase in anxiety and depression is directly proportional to the severity of the illness affecting
the care recipient.6 As you continue on your journey of caregiving, care for your emotional health by watching
for signs or symptoms of anxiety and/or depression.
You should seek help for your anxiety if:

Your worries have bothered you most days for the last six months

You worry about lots of things at once even when there is no particular reason to worry

You can't stop or even control worrying, however hard you try.

You should seek help for depression if you have five or more of the symptoms listed below for two weeks or
more. See your healthcare provider or mental health professional for help.

Persistent sad, anxious or "empty" mood

Sleeping too much or too little, middle of the night or early morning waking

Reduced appetite and weight loss, or increased appetite and weight gain

Loss of pleasure and interest in activities once enjoyed, including sex

Restlessness, irritability

Persistent physical symptoms that do not respond to treatment (such as chronic pain or digestive disorders)

Difficulty concentrating, remembering or making decisions

Fatigue or loss of energy

Feeling guilty, hopeless or worthless

Thoughts of suicide or death

Remember that stress, depression, and anxiety are common among caregivers you are not alone.
Depression and anxiety are very treatable conditions. Even small improvements in the symptoms of anxiety
or depression will help to lessen the strain of caregiving, and insure that you can maintain your caregiving role.
SUMMARY: THE IMPORTANCE OF CARING FOR YOURSELF, THE CAREGIVER
Today, millions of people around the world care for loved ones with neurological disorders such as
Schizophrenia. For many caregivers around the globe, the impact of unaided and often lengthy caregiving can

be significant. Caregiving can create enormous strain on carers, many who are trying to juggle paid work,
family demands, and caregiving. As a result, caregiver stress and caregiver burnout are common. And, all too
often, the daily toll of caregiving results in depression and anxiety for many caregivers. But there is hope and
there is help.
It is our hope here at the World Federation for Mental Health that this information begins a global dialogue on
the impact of caregiving, and the importance of caring for caregivers. It is essential that policies and programs
be developed in all countries to recognize and support caregivers. These caregiver programs and policies
available in some countries are crucial to maintaining caregivers emotional and physical health, and will be
essential as the cadre of caregivers grows worldwide. As the numbers of those with mental illness increase
more caregivers will be needed, and the issue of caring for caregivers will be of great public health importance
to every country. It is essential that researchers around the world continue to explore the link between
caregiving and its impact on a carers emotional and physical health.
There is also help, to support you, the caregiver. There are steps you can take to lessen the impact of
caregiving. One of the best ways that caregivers can care for themselves is to develop their own Caring for
the Caregiver Plan.
This Caring for the Caregiver Plan has three components:
1) Cope with day-to-day demands by getting the help you need
Understand that it is okay to get help
Define the help you need
Seek out resources in your community for help
2) Create a community of carers
Utilize a web-based caregiving coordination service, or a paper-andpencil calendar method, to
organize offers of help
3) Care for your mental health
Watch for signs of caregiver burnout
Watch for signs of anxiety and if necessary, seek help
Watch for signs of depression, and if necessary, seek help
Take the time to write out a caregiver plan for yourself. By doing so, you can help sustain or even improve
your own good mental and physical health, while at the same time providing excellent care for loved ones.
Maintaining good mental and physical health will help you generate a positive attitude, and allow you to
continue to provide needed and valuable care to loved ones.
References:
1

Dhner H, Kofahl C, Ldecke D, Mnich E (Hg). 2008. Family Care for Older People in Germany. Results from the European Project
EUROFAMCARE. LIT Verlag, Hamburg.
2
National Alliance for Caregiving, & AARP. (1997). Family Caregiving in the US: Findings from a national survey. Washington, DC:
National Alliance for Caregiving & AARP.
3
Joling KJ et al. (2008). Cost-effectiveness of family meetings on indicated prevention of anxiety and depressive symptoms and
disorders of primary family caregivers of patients with dementia: design of a randomized controlled trial. BMC Geriatrics, 8: 2.
4
Retrieved from http://www.aagponline.org/advocacy/testimony.asp?viewfull=2
5
Excerpted from the Well Spouse Foundation, 2000. Retrieved from the MS International Federation website,
http://www.msif.org/en/resources/msif_resources/msif_publications/ms_in_focus/issue_3_family/caring_for_the_c.html.
6
Joling KJ et al. (2008). Cost-effectiveness of family meetings on indicated prevention of anxiety and depressive symptoms and
disorders of primary family caregivers of patients with dementia: design of a randomized controlled trial. BMC Geriatrics, 8: 2.

For the full Caring for the Cargiver document, please go to: www.wfmh.com/wp-content/uploads/2013/11/WFMH_GIAS_CaringForTheCaregiver.pdf

CAREGIVER RESOURCES
American Psychological Association
750 First Street, NE
Washington, DC 20002-4242 USA
international@apa.org
www.apa.org
Anxiety Disorders Association of America (ADAA)
8730 Georgia Avenue
Suite 600
Silver Spring, MD 20910
Phone: 240-485-1001
www.adaa.org
American Psychiatric Association
1000 Wilson Boulevard, Suite 1825
Arlington VA 22209-3901 USA
Phone: 703 907 7300
www.psych.org
ARAFMI, Head Office
88/78 William St
Woolloomooloo NSW 2011
AUSTRALIA
http://www.arafmi.org/
ARAFMI, Western Australia
Perth, AUSTRALIA
Email: arafmi@arafmi.asn.au
Web: www.arafmi.asn.au/
Beyond Blue
(Bipartisan initiative of the Australian, state and
territory governments)
PO Box 6100 Hawthorn West 3122
Website: http://www.beyondblue.org.au/
Canadian Mental Health Association
180 Dundas Street West, Suite 2301
Toronto ON M5G 1Z8
Email:info@cmha.ca
http://www.cmha.ca/bins/index.asp?lang=1
Caregiver Action Network
2000 M St. NW, Suite 400
Washington, DC 20036
General E-mail: info@caregiveraction.org
EUFAMI
Diestsevest 100
B3000 Leuven
BELGIUM
E-mail: info@eufami.org
Website: www.eufami.org

Family Caregiver Alliance


785 Market Street, Suite 750
San Francisco, CA 94103
https://www.caregiver.org/
Family Caregiving 101
Web: www.familycaregiving101.org
Lotsa Helping Hands
Web: http://www.nfca.lotsahelpinghands.com
Mental Health America (MHA)
2000 N. Beauregard Street
Sixth Floor
Alexandria, VA 22311
800-969-NMHA (6642)
Website:www.mentalhealthamerica.net
National Institute of Mental Health (NIMH)
6001 Executive Boulevard, Room 8184,
Bethesda, MD 20892-9663
Website: www.nimh.nih.gov
E-mail Address: nimhinfo@nih.gov
National Alliance for the Mentally Ill (NAMI)
3803 N Fairfax Drive, Suite 100
Arlington, VA 22203
USA
Web: www.nami.org
National Alliance for Caregiving
4720 Montgomery Lane, Suite 205
Bethesda, MD 20814
(301) 718-8444 PH
info@caregiving.org
http://www.caregiving.org/
South African Federation for Mental Health
267 Long Avenue
Ferndale Randburg 2194
Website: www.safmh.org.za/index.htm
World Health Organization
Avenue Appia 20 CH - 1211
Geneva 27 Switzerland
Website: www.who.int

World Federation for Mental Health


PO BOX 807
Occoquan, VA 22125 USA
www.wfmh.org