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Dementia, diabetes and family caregiving

In the previous issue of this journal, Feil, Lukman, Simon, Walston, and Vickery (2011) shine a light on an aspect of family caregiving that has received far too little attention to date. Over the past 30 years, many studies have documented the difficulties family and other unpaid caregivers face as they provide help for a relative or friend with Alzheimer’s disease or another dementia and the negative emotional and physical health effects of caregiving-related stress. Some of these studies have included ‘co-existing medical conditions’ in a list of characteristics of the person with dementia that can add to the caregiver stress, but few studies have provided any detail about the impact of co-existing conditions on caregivers. Using results from family caregiver focus groups, Feil et al. (2011) tell us exactly what it means to provide care for a person with dementia plus another serious medical condition, in this case, diabetes. The sample for the study is small, but the voices of the caregivers ring true. Of course, it is difficult to ensure that a person with dementia complies with the treatment instructions for diabetes. Many people who are not cognitively impaired have difficulty complying with diabetes treatment instructions relating to diet, exercise, oral medications and/or insulin, blood glucose testing, and regular medical appointments to monitor diabetes-related foot and eye conditions (Brod, Skovlund, & Wittrup-Jensen, 2006; McDonald, Hertz, Unger, & Lustik, 2009). The focus group caregivers tell us about the additional difficulty of ensuring compliance by a person with dementia. One caregiver says the person with dementia will not do the finger prick testing himself or let the caregiver do it. Others say the person forgets to eat or eats breakfast twice and then cannot report accurately about when or what he or she has eaten (Feil et al., 2011). These and other details from the focus groups help us understand the problems faced by these caregivers. Diabetes management involves numerous activities every day, so caregivers of people with dementia and diabetes face these problems frequently. Moreover, diabetes management requires not only performing some activities, such as eating the right foods at regular intervals in the day, but also avoiding other activities, such as eating the wrong foods or eating at other times in the day or night. In other studies, 40%–59% of dementia caregivers have reported feeling that they have to be ‘on duty’ 24 h a day to prevent problems and ensure the person’s safety (Mahoney et al., 2003; National Alliance for Caregiving, 2011; Schulz et al., 2003). This perceived need for this 24-h vigilance contributes to caregiver stress, and trying to ensure that the person with dementia complies with diabetes treatment instructions can only increase this stress. One of the focus group caregivers says, ‘I tried not to sleep real hard because I wanted to be on the look-out for him’ (Feil et al., 2011). The number of older people with diabetes is increasing, and the number of older people with dementia is increasing. It is not just older people, however. A growing number of non-elderly adults have diabetes, and there is increased awareness of the number of people under age 65 who have dementia. We do not know exactly how many people have both diabetes and dementia. In response to a 2009 online survey of 1002 family caregivers of a person with diabetes, 40% said the person also had memory loss, Alzheimer’s disease, or other mental confusion (The Hormone Foundation and the National Alliance for Caregiving, 2009). Likewise, one study found that 21% of older Medicare beneficiaries with dementia also had diagnosed diabetes (Bynum et al., 2004), and it is likely that many others had undiagnosed diabetes. As the number of people with diabetes and the number with dementia increase in coming years, the number with both conditions will also increase. The risk of each condition is higher in African American and Hispanic American people (Adler, 2007; Gurland et al., 1999), and each condition exacerbates the other: diabetes is associated with a more rapid decline in cognitive functioning in people with dementia (Hassing et al., 2004; Okereke et al., 2008) and cognitive decline is associated with worsening of diabetes symptoms (Munshi et al., 2006). The findings from this study should motivate changes in usual practices, but the needed changes will not be easy because health care and social service professionals are already busy, and current care practices often siloed, focusing on one disease without regard for the patient’s co-existing conditions. Many people with dementia have not been diagnosed, and physicians, nurses, diabetes health educators, and others may not be aware that some of their patients with diabetes also have dementia. As a result, they may assume wrongly that the patient understands and is able to remember treatment instructions, an assumption with potentially disastrous results for the patient. The current emphasis on diabetes self management certainly assumes that the person with diabetes can understand and remember, but even people with mild dementia can forget very quickly. On the other side,