Caring for someone with dementia

Dementia is a neurological condition that can cause increasing impairments in cognitive and daily functioning. Caring for a loved one with dementia can be challenging, and their requirements may vary depending on their level of impairment, so it is important to have a good understanding of their needs, while also looking after your own wellbeing.

What is dementia?

Dementia is the name of a group of neurological conditions that are caused by changes in the brain. There are many types of dementia, of which Alzheimer’s disease is the most common. Other types include frontotemporal dementia, dementia with Lewy bodies, and vascular dementia.

Symptoms of dementia tend to begin gradually and worsen over time, causing increasing impairments in daily functioning.

Symptoms of dementia can include:

• Memory loss
• Impaired cognitive abilities, such as trouble concentrating and planning
• Changes in communication abilities
• Confusion
• Mobility issues
• Changes in mood and behavior

As the symptoms get worse, people with dementia are likely to need increasing levels of support and will typically require a carer to provide consistent help with daily living.

How to help with everyday tasks

People in the early stages of dementia will likely require less assistance than those in the later stages but may still need help with certain everyday tasks, such as cooking, cleaning, gardening, and shopping.

The following tips are useful for helping someone with dementia:

• Try to promote their independence by encouraging them to do as much as they can, utilizing and maintaining their skills, or doing things together, rather than assuming they need help or simply doing things for them.
• It might be helpful to put labels and basic instructions in certain areas of the house, to remind them where things are and how to use certain items.
• Adjustments may need to be made around the house for safety and ease of mobility, such as handrails on the stairs, clear floors without trip and fall hazards, and bold, contrasting colors of furniture and objects so they are clearly visible.
• Try to help them maintain their identity by engaging in hobbies and activities they enjoy, such as listening to their favorite music, taking part in community activities and projects, and watching their favorite shows on TV. This can also help with mental and cognitive wellbeing and prevent behaviors related to frustration and boredom.

How to help with eating and drinking

Sometimes people with dementia forget to eat or drink, or do not realize that they are feeling hungry or thirsty. This can result in dehydration and malnutrition, potentially causing urinary tract infections (UTIs) and increased confusion.

The following tips can be beneficial:

• Regular reminders or offers of drinks can help prevent dehydration. Try giving simple choices, such as asking if they want a hot or cold drink.
• Similarly, you can offer regular snacks or meals, or reminders to prepare food. Again, offer simple choices of foods you know they enjoy.
• It can be useful to take time to make a written list or a collection of images of foods and drinks the individual enjoys, particularly if communication becomes impaired, so that they can choose an image or select from a list, or to remind you of their favorite options. This may change, so it can be revised over time.
• Allow plenty of time for eating and drinking, and try not to rush, as this could cause choking or difficulties with chewing and swallowing.
• If they struggle to hold things, you may be able to find cups and cutlery that are easier to hold or use alternatives such as finger food or straws.
• It may be advisable to prepare hot drinks with some cold water, to prevent the individual from accidentally scalding their hands or mouth.

How to help with personal hygiene

People with dementia may begin to experience incontinence due to UTIs, medications, not being able to get to the toilet in time, or forgetting where the toilet is. This can cause embarrassment and be upsetting, so try to be calm and understanding if this happens.

The following advice allows you to be helpful with personal hygiene:

• You could put up signs directing the way to the toilet and on the toilet door, to help them find their way there.
• If they are fidgeting, holding their stomach, or walking around with no clear intention, it may be that they need to use the toilet but have forgotten where it is or are confused, so offer to go with them or direct them towards the toilet.
• Encourage them to engage in gentle exercise, such as walking and stretches, as this can help with bowel movements.
• If they are regularly incontinent, they may require further intervention, such as incontinence pads or bedding, or a commode for their bedroom.

When assisting with bathing, it is important to try and maintain the individual’s dignity as best as possible while also ensuring their safety.

Some tips here include:

• Ask their preferences so that they don’t feel uncomfortable, such as if they want help with washing, would like you to take them to the bathroom and then leave or wait outside, or want you to look away as they undress.
• Ask if they prefer to have a bath or shower, and how deep the bath water should be or how high the shower head should be, as well as checking if they are comfortable with the water temperature.
• The risk of falls can be significantly increased in the bathroom, so you may need to add handles or use shower seats to ensure their safety.

How to help dementia patients at night

It can be common for people with dementia to wake up a lot in the night and feel disorientated or confused; they may get dressed or walk around the home, and there can be an increased risk of falls.

Use the following strategies to keep them safe and comfortable:

• You may want to place night lights in their bedroom and the hallways, to help prevent trips and falls if they do get up and walk around.
• Leave the bathroom door open and the light on, so that they can easily find their way there in the night.
• They may find it useful to have a clock in their room, so they can see what time it is when they wake in the night.
• Ensure they are comfortable with their bed and pillow, and that they have the right blanket and covers to ensure they are at a comfortable temperature at night.
• Avoid too much liquid prior to going to bed, to prevent needing to get up for the toilet several times. Especially avoid alcohol and caffeine before bed, as this can worsen sleep quality and increase awakenings.
• Engaging in exercise and activities during the day, as well as going outside in natural daylight, can help to maintain their natural body clock and help to prevent waking up at night.
• Avoid regular naps in the day to help with sleeping throughout the night.

Take time for yourself

As a caregiver, it is crucial that you look after your own physical and mental wellbeing as well as the individual you are caring for.

Consider the following:

• You can attend groups with other care providers to discuss emotional difficulties and any challenges you face, share your experiences, and receive support.
• Ensure you take time to engage in activities that you enjoy and socialize with your friends and family, so that you don’t become isolated.
• You may want to attend therapy or speak with a professional. Many carers struggle with feelings such as stress, agitation, guilt, exhaustion, and anxiety, so it can be very helpful to speak with a professional about these emotions to manage your distress and receive appropriate support.
• You can utilize temporary care support or day centers if you need a break.

Do you need professional help?

If you feel that you are becoming overwhelmed with caregiving, if the individual requires more support than you are able to provide, or because your mental or physical wellbeing is becoming affected, there are alternative options.

The following resources may be beneficial:

• Professional caregivers can come to the home to provide support with managing everyday tasks or to contribute to the long-term care of the individual with dementia.
• You can attend training courses, so that you feel more able to manage certain care requirements such as lifting, communication skills, or specific needs of the individual.
• Care homes can provide residential care to people with dementia in settings that are specifically created for this need, with specialists and trained professionals on staff.

It may be helpful to discuss end of life care options with your loved one while they are able to communicate their wishes and to ensure legal and financial plans are put in place.

Many carers experience feelings of guilt if they feel unable to continue providing care to their loved one. It is important to recognize your limitations and ensure that your own wellbeing is prioritized while caring for someone with dementia, as it can be emotionally and physically challenging.

There are support groups and therapeutic options available to help you manage any emotional challenges you face during or after this time.