Caregivers of Dementia Patients

Research has repeatedly shown that caregivers of dementia patients are at high risk for increased psychological stress, socio-demographic burden, and physical illness.

Being a caregiver is hard work. It is especially difficult for caregivers of dementia patients. Since dementia is a progressive condition, a caregiver assumes increased responsibilities over time as they take care of their loved one. They often have high rates of burden and psychological morbidity as well as social isolation, physical illness, and financial hardship. That’s why family caregivers of people with dementia are often referred to as “the invisible second patients”.

How Healthcare Professionals Can Support Caregivers of Dementia Patients

Healthcare professionals have a responsibility to guide caregivers of dementia patients towards the right help and resources. Keep in mind that the dementia patient may very well need supervision almost 24 hours per day, every day. Granted, this depends on the type of dementia and the level of dementia. But without the proper training and tools, it may be difficult for the caregiver to deal with common situations such as responding appropriately to repeated questions, managing aggressive behaviors, or maintaining proper hygiene with self-care activities. In many cases, the caregiver may simply need someone to talk to in order to help him or her fight psychological obstacles successfully.

Techniques for Caregivers

There are a variety of techniques to help caregivers cope with the stress and burden of taking care of a dementia patient:

1. Self-compassion training, exercises programs, and psychological counseling are effective for caregivers. It is important to know that every caregiver reacts to these strategies differently. There is no one uniform intervention that is proven to help all caregivers of dementia patients. So, healthcare providers should educate caregivers regarding different coping resources available for them.
2. Telehealth interventions are available for dementia caregivers and can save time, reduce stress, increase ease and efficacy of care, and improve safety. These interventions include online support groups, robotic companions, as well as online reporting of symptoms.

Resources for Caregivers The following resources may also help caregivers of dementia patients:

1. In person as well as online community support groups by the Alzheimer’s Association: https://www.alz.org/help-support/community/support-groups. The Alzheimer’s Association offers peer-to-peer as well as professionally-led groups and an online community for caregivers.
2. Caregiver resources based on state agency: https://www.aarp.org/caregiving/local/info-2017/important-resources-for-caregivers.html. This website lists different organizations, support agencies, care guides, and how to videos. They also provide a list of government agencies per state.
3. The caregiver network helps caregivers find support when they are working and caregiving at the same time: http://caregiveraction.org/i-have-job-and-im-caregiver-my-loved-one. This resource provides a checklist that can help a caregiver during the tough times.
4. National Alliance for Caregiving: https://www.caregiving.org/resources/general-caregiving/. This site provides information on how to cope with the challenges of caring for a person with dementia.

Learn More:

• Teaching Caregivers to Work with Rehabilitation Patients
• An Exploration of the Impact of Dysphagia on Clients and Caregivers

References:

1. Gilhooly, K.J., Gilhooly, L.ML., Sullivan, M.P., McIntyre, A., Wilson, L., Harding, E., Woodbridge, Crutch.s. A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatrics. 2016; 16 (106).
2. Iavarone, Ziello, R.A., Pastore, F., Fasanaro, M. A., Poderico, C. Caregiver burden and coping strategies in caregivers of patients with Alzheimer’s disease. Neuropsychiatric Disease and Treatment. 2014;10:1407-1413.
3. Glueckauf, R., Ketterson, T.U., Lookis, J.S., Dages, P. Online support and Education for Dementia Caregivers: Overview, Utilization, and Initial Program Evaluation. Telemedicine Journal and e-Health. 2004; 10 (2): 223-231.
4. Williams, Arthur, A., Niedens, M., Moushey, L., Hutfles, l. In-home Monitoring support for Dementia Caregivers: A Feasibility Study. Clinical Nursing Research. 2013; 22 (2): 139-150.
5. Thompson, C.A., Spilsbury, K., Hall, J., Birks, Y., Barnes, C., Adamson, J. Systematic review of information and support interventions for caregivers of people with BMC Geriatrics. 2007; 7:18.
6. Brodaty, H., M.D., Donkin, M. Family caregivers of people with dementia. Dialogues in Clinical Neuroscience. 2009 Jun; 11(2): 217-228.