Unintentional weight loss is a prevalent and concerning issue for individuals living with dementia, particularly frontotemporal dementia (FTD). Gradual or noticeable weight loss can lead to increased frailty and adverse health outcomes. This article explores the causes of weight loss in dementia, with a focus on frontotemporal dementia, and discusses potential management strategies.
The Link Between Dementia and Weight Loss
Weight loss is among the several effects and symptoms of dementia. Dementia can lead to reduced food intake and weight loss due to its impact on appetite, food perception, and hunger regulation. Behavioral changes such as roaming, coordination problems, and difficulties with self-feeding can further contribute to undereating and weight loss.
Research indicates that a significant percentage of people with dementia experience weight loss. Studies show that between 20 and 45% of community-dwelling individuals with dementia lose weight within a year, and this frequency increases with the severity of the condition.
Different types of dementia can affect weight trends, as well as the stage of the disease. Early on in Alzheimer’s Disease, weight may not change. However, in moderate to severe stages, weight loss may become noticeable. Frontotemporal dementia may initially cause hyperphagia and weight increase, but can later lead to weight decrease. The effects of strokes on eating-related motor and cognitive skills can influence the weight changes associated with vascular dementia. Both weight and appetite might be affected by Lewy body dementia.
Causes of Weight Loss in Dementia
Weight loss in dementia patients is often due to direct and indirect causes.
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- Appetite Loss: Dementia often results in appetite loss due to brain disorders that compromise hunger signals and the drive to eat. Cognitive problems and apraxia might make meal recall or regulation difficult. Depression, common in those with dementia, lowers appetite.
- Medication Side Effects: Medications for depression and dementia may reduce appetite. Medications with anticholinergic effects, sometimes used in the treatment of dementia, may lead to decreased appetite and memory impairment. Acetylcholinesterase inhibitors (AChEIs), used to treat cognitive symptoms associated with dementia, can also lead to weight loss.
- Dysphagia: Many times, people living with dementia find it difficult to swallow, which reduces their quality of life. Difficulties moving food or liquid from the mouth to the stomach cause choking, aspiration, and malnutrition. Early on in dementia, dysphagia can develop and get worse with time. Studies reveal that dysphagia affects 15% to 23% of older adults living in communities and up to 90% of individuals with hospital-acquired pneumonia. Dementia dysphagia can limit food intake and lead to malnutrition for several reasons. First, it may make eating and drinking unpleasant or dangerous, causing individuals to avoid certain foods and liquids. Neglecting nutrients can lead to dehydration and malnutrition. Second, cognitive problems associated with dementia complicate things. People living with dementia may struggle to express their dietary preferences or adhere to meal guidelines, which can lead to dissatisfaction and reduced food intake. Problems with swallowing can also lead to food being retained in the mouth, which can significantly impact hydration and nutrition.
- Changes in Eating Patterns and Preferences: Cognitive decline in late-stage dementia might alter eating patterns and preferences. One may develop a loss of appetite, difficulty identifying food, and a taste for sweeter or more familiar meals. Meals could be disrupted by pacing, nervousness, and restlessness. Eating can be challenging for individuals who fidget, pace, or become confused. Physical exercise, discomfort, and environmental cues may aggravate these habits.
- Mobility Issues: Particularly for those with physical disabilities, mobility issues can restrict food availability. Movement can be limited by amputation, cerebral palsy, spinal cord injuries, and arthritis, thus affecting access to food and preparation. Individuals with mobility issues often struggle with eating coordination. Because cerebral palsy can cause rigidity or stiffness, cutting food or handling utensils can become difficult. Joint discomfort and reduced dexterity caused by arthritis can make it challenging to handle tools and containers.
- Sensory Changes: Meal enjoyment can be significantly affected by changes in taste, smell, and visual perception. Taste and scent are closely linked, determining food acceptance and pleasure. As one ages, these senses may fade, which can affect the perception of food taste. Taste discrimination becomes more difficult when the number of taste buds and their sensitivity drop. Furthermore, the decline in the sensitivity of the olfactory system to food-related odors is less apparent. Meal attractiveness is influenced by vision, as the initial interest in and ingestion of food depend on its appearance. Reduced visual acuity can make it challenging to discern the color, texture, and presentation of dishes, thereby reducing the pleasure of the meal. Sensory changes may lower food interest, which can impact diet and nutrition.
- Communication Problems: Communication problems mean that people living with dementia can be untreated for metabolic illnesses, cancers, or infections. Lung infections and urinary tract infections can cause dementia-like symptoms that complicate the diagnosis of cognitive deterioration. An individual who is unable to speak may have metabolic diseases, such as vitamin B12 deficiency, which can mimic dementia and remain undetected. If the person does not disclose new or worsening symptoms, cancer and other serious illnesses may not be identified early, thereby delaying treatment and potentially compromising their health outcomes.
- Neuropsychiatric Symptoms (NPS): Elevated NPS were associated with decreased BMI in AD and increased BMI in FTD.
- Other Factors: The origins of weight loss in dementia are complex, with proposed mechanisms including atrophy of regions responsible for appetite regulation, inflammatory processes, genetic factors, and changes in olfaction among other causes
Frontotemporal Dementia (FTD) and Weight Changes
Frontotemporal dementia (FTD) is an umbrella term for a group of brain diseases that mainly affect the frontal and temporal lobes of the brain. In frontotemporal dementia, parts of these lobes shrink, known as atrophy. Symptoms depend on which part of the brain is affected. Some people with frontotemporal dementia have changes in their personalities. They become socially inappropriate and may be impulsive or emotionally indifferent. Frontotemporal dementia can be misdiagnosed as a mental health condition or as Alzheimer's disease. But FTD tends to occur at a younger age than does Alzheimer's disease. It often begins between the ages of 40 and 65, although it can occur later in life as well.
Weight changes, neuropsychiatric symptoms (NPS), and cognitive decline often coincide in Alzheimer’s disease (AD) and frontotemporal dementia (FTD); however, the direction of their relationship remains unclear.
Unlike later stages of Alzheimer’s Disease, LBD-related weight loss may be associated with dietary changes and alterations in appetite.
Types of Frontotemporal Dementia and Their Impact on Eating Habits
- Behavioral Variant FTD: The most common symptoms of frontotemporal dementia involve extreme changes in behavior and personality. Loss of empathy and other interpersonal skills. Lack of interest, also known as apathy. Changes in eating habits.
- Language Variant FTD: Some subtypes of frontotemporal dementia lead to changes in language ability or loss of speech. Increasing trouble using and understanding written and spoken language. Trouble naming things.
When to Be Concerned About Weight Loss
Typically, weight loss occurs as dementia advances and cognitive decline worsens. Early signs of dementia, such as communication difficulties and memory loss, rarely accompany weight loss. However, dementia can lead to significant changes in nutrient intake and eating habits, which may result in unintentional weight loss. People may forget to eat or lose interest in food early on in dementia, although this hardly results in weight loss. Later phases of dementia can lead to significant weight loss due to food identification problems, reduced appetite, and difficulties swallowing. Cognitive limitations worsen the situation by making it harder to remember to eat or prepare meals.
Patients should be concerned about fast or severe weight loss induced by dementia. Medically significant and requiring attention is unintentional weight loss of 5% over 6-12 months. This weight loss is caused in part by changes in appetite, eating problems, and decreased food intake.
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Rapid weight loss in dementia can be rather dangerous for health and suggest disease progression. The rapid weight loss of dementia can lead to drooping skin, frailty, and fatigue. Food rejections and forgetfulness could aggravate weight loss.
Management Strategies for Weight Loss in Dementia
To solve the basic reasons and symptoms of dementia, weight loss needs multifarious treatment.
- Medications: An orexigenic antidepressant, mirtazapine, can restore appetite and weight gain in people with dementia and co-morbid depression. See a doctor to ensure the medicine is suitable and monitor its effects.
- Nutritional Approaches: The implementation of nutritional approaches is of paramount importance. A diet heavy in lean proteins, fruits, and vegetables helps preserve muscle mass and integrity. Offering smaller, more frequent meals and ensuring the food tastes good and is easy to eat will help consumption. Severe weight loss or malnutrition may require dietary supplements recommended by a dietitian.
- Environmental Modifications: Surroundings can greatly influence eating habits. To raise food interest, arrange a calm, inviting dining area, employ visual cues, and let the person help prepare the meals. Motivational physical activity will help to increase health and appetite.
- Consideration of Medications: Medications for dementia can profoundly change weight. Not licensed for dementia but extensively taken off-label, antidepressants such as mirtazapine have strong orexigenic effects that can cause weight gain and appetite. Weight loss may result from the use of acetylcholinesterase inhibitors (AChEIs), including galantamine, rivastigmine, and donepezil, which are used to treat cognitive disorders. Though not meant for dementia, antipsychotics and anticholinergics may induce adverse effects, including weight loss or other weight-related problems. Though not usually, antidepressants can change the weight of someone with dementia. Through neurotransmitters and receptors, these medications change metabolism and appetite. Some antidepressants, particularly those that affect histamine receptors, may promote weight gain and raise appetite. Some antidepressants, meanwhile, cause weight loss and lower appetite.
The Role of BMI in Dementia
Research suggests that changes in weight during midlife may increase or decrease the risk of dementia. According to the Framingham Heart Study, a midlife BMI both increases and decreases the risk of dementia. These results underscore the importance of lifetime weight monitoring as a potential risk factor for dementia.
- Obesity and Dementia Risk: Obesity is associated with an increase in dementia risk. Obesity between the ages of 35-65 can increase dementia risk in later-life by about 30%. This is from an analysis that combined 19 different long-term research studies. The same analysis also showed that being overweight but not obese, didn’t carry the same risk. Other studies have shown similar results. Obesity is also linked to other dementia risk factors. People with obesity are two to three times more likely to have high blood pressure and type 2 diabetes. Obesity is when a person has an excess of body fat that affects their health. The NHS define obesity as having a body mass index (BMI) of 30 or above. This is measured by dividing an adult’s weight in kilograms by their height squared (in m).
- Maintaining a Healthy Weight: The two most important things to do to lose weight are to exercise regularly and to eat healthily. Eating a healthy, balanced diet may help to achieve a healthy weight. No single ingredient, nutrient or food can improve health by itself. Instead, eating a range of different foods in the right proportions is what makes a difference. By eating a balanced diet you are more likely to get all the nutrients you need to stay healthy. The NHS Eatwell guide shows what food groups make up a balanced diet and roughly how much of each is needed to stay healthy. Taking regular physical exercise can also help to achieve a healthy weight. It is also one of the best things that you can do to reduce your risk of getting dementia. ‘Moderate intensity’ aerobic activity is anything that makes you breathe faster and feel warmer. ‘Vigorous’ activity is anything that makes you sweat or get out of breath after a while, making it difficult to talk without pausing for breath. In general, one minute of vigorous activity is equal to two minutes of moderate intensity activity. The official UK recommendation is to try to do at least 150 minutes of moderate intensity activity each week or 75 minutes of vigorous activity. You can break this activity up into smaller sessions.
- How Obesity Affects the Brain: The size of a person’s brain starts to decrease naturally as they age. However, research has shown a relationship between BMI and brain size in people around the age of 60. The research found that the higher someone’s BMI the smaller their brain was. The increased brain shrinkage associated with obesity has been suggested by some to age the brain by around 10 years. Research has shown also that the areas of the brain that start to shrink more in Alzheimer’s disease also shrink in people who are obese. Obesity can also lower a person’s resilience to the damage in the brain that Alzheimer’s disease causes, leading to worse symptoms and faster disease progression. Obesity can also lead to chronic inflammation in the body, which can have knock-on effects on the brain. Inflammation in the brain is linked to dementia as it can cause the over-activation of immune cells in the brain which leads them to damage the brain’s nerve cells.
- Weight Loss and Dementia: Studies have shown that healthy weight loss in midlife can improve memory skills and attention. In people who were overweight (with a BMI of greater than 25) losing 2kg was enough to benefit them. These effects were measured over a few months, and the long-term effects were not recorded. The research only looked at memory and thinking skills and did not measure dementia risk itself. Other research shows that people who maintain a healthy weight are more resilient to the changes in the brain that are caused by Alzheimer’s disease. However the relationship between weight change and dementia risk is complicated. Weight loss may be an early feature of dementia in some people. This is because dementia can affect a person’s ability to manage their nutrition leading to unintentional weight loss. Weight loss is also common in the later stages of dementia, due to loss of appetite or difficulties with chewing. In general, while maintaining a healthy weight may reduce a person’s risk of developing dementia, it does not guarantee protection against dementia.
How Dementia Affects Appetite
Some people with dementia lose interest in food, while other people may eat too much or too often. They may have forgotten that they’ve recently eaten, or worry about when the next meal is coming. Poor appetite and stopping eating, a person with dementia may lose interest in food. They may refuse to eat it or spit it out. The person may become angry or distressed, or behave in a challenging way during mealtimes. If someone isn’t eating enough, it can lead to weight loss and less muscle strength. They may also feel tired and weak. This can make them frailer and less able to recover from infections or viruses. If you’re concerned about someone who continues to refuse to eat, speak to a pharmacist or the GP
Reasons for Appetite Loss in Dementia
- Depression: Loss of appetite can be a sign of depression - a common in people with dementia. There are effective treatments for depression, including medication and other therapies. If you suspect that the person you are caring for has depression, talk to the GP
- Communication Barriers: The person may have problems communicating that they’re hungry, that they don’t like the food they have been given or that the food is too hot. They may be unsure what to do with the food. They may communicate their needs through their behaviour, such as refusing to eat or holding food in their mouth. You could try giving them a choice of food, or use prompts and pictures so they can choose the food they would like.
- Pain: The person may be in pain or discomfort, which can make eating difficult. They may have problems with their dentures, sore gums or painful teeth. Going to the dentist for oral hygiene and regular mouth checks is important.
- Tiredness and Concentration: Tiredness can cause people with dementia to not eat or to give up partway through a meal. It can also lead to other difficulties, such as problems with concentration or with coordination. A person with dementia may have difficulties focusing on a meal all the way through. Try to support the person to eat when they are most alert.
- Medication: Changes to medication or dosage can affect a person’s appetite. If you think this may be the case, speak to a pharmacist or the GP.
- Physical Activity: If the person is not very active during the day, they may not feel hungry. What can you do to help? There are lots of ways to increase a person’s appetite and interest in food and drink. Some people with dementia may eat too much or too often. They may have forgotten that they’ve recently eaten, or worry about when the next meal is coming. If a person is overeating, they may also eat foods that their doctor has told them to avoid. They might frequently ask about or search for food. This can be stressful for them and the people around them. Certain types of dementia, such as frontotemporal dementia, may be more likely to cause overeating and other changes to eating behaviour.
Supporting Individuals with FTD
Although there are currently no disease-modifying treatments available for FTD, there are resources to learn how to best approach common symptoms in FTD, reduce stress and promote quality of life. Learning how to approach changes caused by FTD can feel like a steep learning curve. No one enters this journey prepared and mistakes will be made even with the best intentions. Feelings of grief and loss cannot be ignored while seeking care and support. Connecting with others who understand FTD and hearing about their experiences is extremely helpful. FTD Support groups offer an emotionally supportive environment in which to discuss care challenges and approaches. In some cases, medications may be considered for specific symptoms. Building a care team of professionals, friends and family can help support changes that can occur throughout the journey. Our AFTD HelpLine is also here to help. It is important for people with FTD to stay engaged in enjoyable, meaningful and stimulating activities of their choosing as long as they are able and it is safe to do so. As FTD progresses, adjustments need to be made based on the person’s abilities and goals. Seek ways to adapt interests and hobbies to the person’s current needs and provide additional support and supervision, as needed. For example, if competitive poker or bridge was a favorite social activity, playing a more casual or simpler version with fewer rules, if needed, can engage the person, connect with that part of their past, and provide a meaningful way to interact with others. These activities should bring enjoyment to the person with FTD. If one becomes too difficult or stressful as abilities change, it is time to reevaluate and adjust. Symptoms in FTD are the result of changes in the brain that the person with FTD can't control or change. A person with FTD may act compulsively, aggressively, or otherwise out of character. Caring for a person with FTD is an extremely difficult, frustrating, and often emotionally overwhelming journey. You are not alone. AFTD can help you find caregivers and other people who understand FTD. Find a support group and other resources in your area. Acknowledge and manage your feelings. FTD robs people of their self-control and ability to make rational decisions. Challenging behaviors are symptoms of the disease, and not deliberate actions or personal attacks. These struggles can leave you physically and emotionally stressed. FTD isn’t well known. Nor is it understood even within the health care community. Tend to your grieving process. AFTD’s Walking with Grief: Loss and the FTD Journey uses personal stories from care partners and persons diagnosed to describe those challenges, share practical information, and guide all affected by FTD as they navigate the grieving process. Trust yourself. You are advocating for someone with a serious medical condition who deserves respect and competent care no matter how poorly others understand their symptoms. As the primary care partner, you will have the most intimate knowledge of what does or does not work for your loved one, and any changes that occur in their condition. Ask questions and speak up. Take care of yourself. You are in it for the long haul. Pace yourself, and finds ways to reenergize. Ask friends and family for the help that you need. Taking care of yourself is essential.
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