Feeding A Dementia Sufferer Can Create Anxiety For The Caregiver Too

Dementia care is extremely challenging and demanding; putting physical, emotional and financial stress on families, so there is great need to develop strategies designed to support family caregivers.

Many people with dementia lose some ability to feed themselves, creating a significant challenge for family caregivers, as well as feelings of anxiety. People with dementia often experience unintentional weight loss and therefore can be at risk of malnutrition. This may be due to reduced appetite, difficulty swallowing, forgetting and/or refusing to eat, and poor food safety practices. Weight loss may also be attributed to increased energy expenditure (often from pacing and wandering) and changes in metabolism associated with the disease process. For people with dementia, weight loss often leads to decreased mobility and therefore reduced activities of daily living, as well as cognitive impairment. Often poor diet and unexplained weight loss and wasting create substantial anxiety for family caregivers. Dementia caregivers are exposed to the same kind of anxiety as are caregivers for victims of TBI and other conditions.

Caregivers Offer "Real Life" Experience And Advice

Recently, researchers at Griffith University in Queensland, Australia, conducted interviews with family caregivers of people with dementia, in order to understand this environment, and to learn the strategies these family caregivers have developed for providing nutrition to their loved ones.

When it came to meal times, the challenges experienced by family caregivers were numerous and varied, with cognitive issues and functional decline commented on most frequently, in addition to instances of depression.

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Cognitive issues included forgetfulness, disorientation and confusion. Issues with functional decline included swallowing difficulties, loss of appetite, difficulty making food and using utensils, and trouble recognizing foods. Common behavioral issues at meal times included aggression, frustration and anger toward the family member. These often occurred due to the person with dementia not wanting to be fed by someone else or out of fear. While these issues were confronting, the family caregivers had developed many strategies to overcome them. One caregiver noted "we found that if we sat with him to eat, you know eating is a social thing, a social experience. So we sat alongside him and had a cuppa while he had his breakfast and that really helped" (58-year-old female family caregiver).

Rapid weight loss and noticeable wasting was a source of considerable anxiety for most family caregivers. A feeling of failure, helplessness and a significant source of emotional stress often accompanied this anxiety. One caregiver said "I just went to pieces when she lost weight. I still go to pieces . . . she was so skinny and bony and unhappy" (62-year-old female family caregiver).

Mealtime Can Be Difficult And Frustrating

Overall, family caregivers found the care around providing meals to their loved one very difficult, at times frustrating, and often left them feeling distressed. Responses suggested that this type of care had been a major contributor to the overall burden of care. One caregiver described it as "time consuming and draining because you had to be there and concentrating. It took an hour to feed her. It was a big challenge" (29-year-old female family caregiver). Another described the care as seemingly everlasting: "You never really have a break. You never feel free to actually go and do anything, or stay overnight anywhere without a whole lot of planning and packing" (68-year-old female family caregiver). Some caregivers also acknowledged that caring for a family member with dementia also meant that occurrences like family meals and social occasions involving food became more frequent.

8 Tips To Make Mealtime Easier

Interview participants had some general advice for new family caregivers:

    • Remember that food refusal is not a reflection of your cooking skills. Reduced appetite, taste changes, challenging behaviors at mealtimes, restricted food intake and weight loss are common among individuals living with dementia.
    • Seek knowledge and practical skills relating to nutrition support and managing feeding difficulties early in the caregiver journey as this can reduce burden later.
    • Be patient. Persistence pays off.
    • Look after your own mental health too (e.g. it is OK to ask for help).

The participants also had eight concrete tips for family caregivers:

    1. Utilize simple strategies that are effective in preventing weight loss e.g. using loved foods to maintain intake.
    2. Keep food simple, tasty, traditional, culturally appropriate, attuned to individual preferences.
    3. Reduce choice and decision-making at mealtimes. Decision-making can often cause confusion and agitation.
    4. Avoid battles over food. Diffuse agitation and try again later.
    5. Offer regular drinks. Thirst is often not functionally adequate to ensure hydration.
    6. Assistance and supervision with eating is important and often required.
    7. De-clutter mealtimes to make eating easy.
    8. Make an event of mealtimes. Build a routine (e.g. music, settings, socialization, special plates).

Caregivers Also Need Support

The family caregivers in this study discussed receiving very little or no support, education, or resources from health professionals in terms of how to deal with the nutritional issues that arise in people with dementia. Even when they had joined support groups and were discussing behavioral issues, feeding difficulties and weight were never really covered as there were so many other topics for discussion. As a result, it was our intention that by us acknowledging this shortfall, family caregivers may start a dialogue with their healthcare provider or with other caregivers about their nutrition challenges. It is recommended that a short discussion with a family doctor could result in you receiving a referral to an experienced dietitian who can provide advice that is tailored to individual needs. Or discuss difficulties with others in a similar situation who may have developed strategies to overcome the same difficulties.