Caregiver emotions and stress

Caregiving for a dementia patient can be very stressful, both physically and emotionally. Overwhelmed caregivers start neglecting their own health and well-being and do not consult doctors for their own problems and stress. Often, feeling isolated from friends and relatives, they do not know how to ask for help.

On this page:

• Caregiving for dementia is stressful by nature
• Problems in India as caregiver role is not recognized
• Check your stress levels
• Some ways to reduce stress
• Tips on seeking help
• The importance of support groups and forums
• See also…

Caregiving for dementia is stressful by nature

Caregivers sometimes feel that they must be doing something wrong if they are feeling tired or stressed. As a result, in addition to the stress they already feel, they think of themselves as inadequate.

The fact is that caregiving is acknowledged to be a stressful activity, and caregiving for a dementia patient is known to be the most stressful of caregiving activities.

The US 2010 Alzheimer’s Disease Facts and Figures report provides an overview of the way caregiving for a dementia patient differs from other caregiving, and gives the impact on caregivers in terms of stress. According to this report, caregiving for dementia patients is more stressful than caregiving for other older people. To quote:

More than 40 percent of family and other unpaid caregivers of people with Alzheimer’s and other dementias rate the emotional stress of caregiving as high or very high, compared with 28 percent of caregivers of other older people. About one-third of family caregivers of people with Alzheimer’s and other dementias have symptoms of depression.

The report also states:

One study of family care provided for people with dementia in the year before the person’s death found that half the caregivers spent at least 46 hours a week assisting the person; 59 percent felt that they were “on duty” 24 hours a day; and many felt that caregiving in this end-of-life period was extremely stressful. The stress of caregiving was so great that 72 percent of the family caregivers said they experienced relief when the person died.

Another finding is that caregiving for dementia patients lasts much longer than other caregiving:

Because Alzheimer’s and other dementias usually progress slowly, most caregivers spend many years in the caregiving role. At any point in time, 32 percent of family and other unpaid caregivers of people with Alzheimer’s and other dementias have been providing help for five years or longer, including 12 percent who have been providing care for 10 years or longer.An additional 43 percent have been providing care for one to four years, and 23 percent have provided care for less than a year.(43) Caregivers of other older people are less likely to have provided care for 1–4 years (33 percent) and five or more years (28 percent), and more likely to have provided care for less than one year (34 percent).

The report has many such findings, which confirm that caregivers for dementia patients are likely to get stressed. This underlines the need to be alert on any sign of stress so that action can be taken.

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Problems in India as caregiver role is not recognized

While India has a strong family system, this does not translate into good support for dementia caregivers because dementia is often confused with old age and caregiving is not recognized as being different from normal familial support of normal elders. According to the 10/66 group’s qualitative study in India quoted here, while the symptoms of dementia are widely recognized, they are considered a normal, anticipated part of ageing and not as an organic brain syndrome, or indeed as any kind of medical condition.

As the report explains, this general lack of awareness means that often there is a stigma is attached to the patient, and/ or to family members who are held responsible for this state of the patient. To quote,

Behavioural symptoms of dementia; wandering, calling out, making accusations; may be taken by outsiders as prima facie evidence of neglect or abuse. Caregivers then face a double jeopardy, the strain of care heightened by the stigma and blame that attaches to them because of the disturbed behaviour of their relative.

In the paper, Dementia care in developing countries: The road ahead, Shaji discusses the caregiver role and challenges. A quote:

The levels of caregiver strain, including that contributed by behavioural disturbances and stress are as high as in developed countries despite extended family networks and home care.

Another paper where he discusses this is Behavioral symptoms and caregiver burden in dementia; he states:

The principal sources of caregiver strain were Behavioral problems associated with the dementia syndrome, and incontinence. Strain was exacerbated by the lack of supportive response by local health services, and by lack of support and, sometimes, criticism from other family members. Family conflict was commonly encountered. The majority of caregivers experienced significant deterioration in their mental health.

A recent study on effectiveness of supporting home-care through interventions has been published by Amit Dias: The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India. The interventions were basic education about dementia, education about common behaviour problems and how they can be managed, support to the caregiver (for example helping elderly caregivers with the patient’s activities of daily living), referral to medical professionals for severe behaviour problems, networking of families to enable the formation of support groups, and advice regarding existing government schemes for elders. The study concludes:

Home based support for caregivers of persons with dementia, which emphasizes the use of locally available, low-cost human resources, is feasible, acceptable and leads to significant improvements in caregiver mental health and burden of caring.

The Dementia India Report 2010 recognizes the high stress that carers of dementia patients face. According to the report, when caregivers were compared with that of a control sample, the prevalence of major depression was 2.8 to 38.7 times higher. The difference was found to be larger for studies of dementia carers when compared with studies of mixed groups or people caring for those with physical disorders. The report also quotes studies done on 10/66 Dementia Research Group sites, where they found the prevalence of psychological morbidity to be consistently higher among carers of persons with dementia as compared to people who were just living with older people. In most sites, one fifth to one third of carers had significant psychological morbidity.

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Check stress levels

Check out your stress levels and suggestions to handle it at the Alzheimer’s Association’s Caregiver Stress Check page.

Another very useful resource to understand whether a caregiver is stressed or not, is available Amercian Academy of Family Physician’s page:  A Practical Guide to Caring for Caregivers. This page also includes data on factors that affect caregiver stress and offers number of suggestions.

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Some ways to reduce stress

Here are some things that can help:

• Understand which aspects of caregiving are causing stress. Seek help / change the caregiving approach accordingly.
  • If the sheer amount of work is tiring, consider using attendants at home, or leaving the patient for some hours at a day-care facility.
  • If stress is caused by emotional hurt and challenging behavior, learn tools to handle this. Do make sure there is no pain/ other medical condition causing the strange behavior
  • Stress could be a result of trying too hard and then feeling frustrated. Or expecting improvement and not finding any. In such a situation, stress can be reduced by accepting the nature of dementia and its progression, and pacing the caregiving to match it.
• Use support groups and counseling for ideas on reducing the workload and/ or stress.
• Avoid caregiver isolation by participating in communities (online, support groups in the city).
• Take breaks by availing facilities like day care and respite care
• Ask friends, family, colleagues for help. Even if they cannot help with direct caregiving jobs, they can assist with other chores.
• Take care of your own health by eating nutritious food, doing exercise, meditating, etc. Caregivers who are stressed may be tempted to take short cuts, but these only reduce the overall energy levels and sense of well-being and increase stress over time.

Try to take time out to do something you enjoy. Maybe you would like to read your favourite books, see a funny movie, listen to music, go out to meet friends, attend a performance you want to, pamper yourself by buying something you want, take a vacation. Ask friends to help you to take a break to indulge in these stress-breakers. Or use services like day care and respite care to give yourself some “me-time”.

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Tips on seeking help

There are many reasons that people around us do not help us.

• They may not know we need help
• They do not know what to do to help. They may not have the skills needed, or know that their help is welcome
• They may find it overwhelming to see a dementia patient, and not be comfortable assisting in caring tasks

Things that can be done to get help:

• Letting people know the reality of dementia patients and how caregiving is
• Letting people know that their help is welcome
• If people make unsuitable suggestions, express gratitude for their having tries to help, and be gentle in explaining why the suggestion is not suitable
• Ask for help in specific chores, depending on the abilities of the person.
  • For persons who seem uncomfortable in the presence of the patient, choose errands that need to be done and do not require interacting with the patient
• Let people know of general ways they can help, so that they can offer help in ways that match their inclination
• Avoid any mode of speaking that sounds like complaining or like one is a martyr
• Seek emotional support only from people who are willing to understand the situation and seem able to provide emotional support

Sometimes overwhelmed caregivers tend to talk to everyone they meet about their problems, but most people are unable to handle this and start backing off. It is better to use most people for tasks that need to be done–that will provide some relief directly. For emotional support, select a few persons who seem willing to and are able to provide such support.

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The importance of support groups and forums

A often underrated (in India) way of getting support and reducing stress is using support groups and forums.

As most people in India do not understand the specific challenges of dementia care or appreciate caregiver stress, they are unable to help caregivers even if they have the best of intentions. They assume that the patient is a typical elder, and do not grasp the impact of dementia-related confusion and dwindling abilities, and because of this, the advice they give caregivers is quite unsuitable for the patient. For example, they may insist that the caregiver explains complex things to the patient, or suggest more outings and variety, or say that caregivers should “obey” the patient, without realizing that this only puts too much stress on the patient. Caregivers implementing such advice may worsen the situation.

Dementia support groups, on the other hand, allow caregivers to interact with others who are facing similar situations and it is easier for everyone to talk frankly and exchange problems and tips. They share experiments that have worked and experiments that have failed. Participating in such groups helps caregivers realize they are not alone, and it is a relief to be able to talk without being lectured on how looking after elders is a “duty.” Some suggestions received in such groups are very creative, and help change the caregiving situation so much that the source of stress is reduced.

Support groups are not available in all cities. However, it can be quite a relief even to check online forums where many caregivers exchange problems and suggestions. You can even enroll in them and post problems or seek advice anonymously.

Check the city-wise resource pages for support groups in various cities of India, or the informational websites page for online groups.

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See also….

Caregiver resources in India and Other dementia/ caregiving resources: Several of these sites contain tips for caregiver stress. Many sites have downloadable files with information; some have resource lists. The following are helpful:

• Coping with Emotions and Stress in Alzheimer’s Caregiving: A Resource List

Books and DVDs: Caregiver emotions and taking care of yourself are addressed specifically in two chapters of The 36-Hour Day. Another useful book is Alzheimer’s: A Caregiver’s Guide and Sourcebook, by Howard Gruetzner; this book devotes a couple of chapters to caregiver depression and coping with ongoing stress.

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