How to enjoy Christmas: Parkinson’s Disease and Dementia

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Christmas can be stressful at the best of times. For carers of someone with Parkinson’s Disease and Dementia, Christmas can be emotionally and physically challenging. Here are some top tips for carers of someone with Parkinson’s Disease and Dementia to help get the most out of the festive season.

Overstimulation and Socialising

Someone with Parkinson’s Disease can find a lot of people around, a change of routine and being more active a challenge as mobility difficulties, fatigue sets in. . Equally if you also have Dementia will find Christmas stressful. Everyone together, heightened noise and conversation can be overwhelming.

Try and avoid too many sounds. Christmas crackers, loud music and TV noise can become confusing for someone with Dementia. Particularly if all these noises are happening at the same time.

Young children running around and playing can be highly stimulating. Children love Christmas and often seeing children enjoying themselves can bring much enjoyment. Its advisable to keep an eye on your loved one to check whether they are becoming overwhelmed, distressed and tired. Noise levels can be a big trigger for confusion and distress.

Setting aside a quiet area or room for them is a good idea. Bringing something familiar from their home such as a cushion, throw and spraying a familiar scent of theirs can help to reduce their anxiety.

Let everyone else know to leave them alone and allow them some quiet time and to reduce the noise levels.

Supporting a Routine for Parkinson’s Disease and Dementia

Knowing their routine can help you to factor this into your day. If they know what is happening, it can reduce their stress. By allowing extra time in your busy schedule in the mornings can help make them more settled and comfortable.

Working in some of their normal routines for them is helpful, but if your home is not their home then an unfamiliar environment can become upsetting and may not remember where they are. Little snippets of their routine can easily be incorporated with the help of other family members.

Do they have a cup of tea at particular times of the day? A cup of tea in their normal cup with their favourite biscuit can be helpful in lowering their stress levels and in turn yours. Do they watch a particular programme at certain times of the day? Many programmes can be recorded or saved for them to watch. Do they have their meals at certain times? Bringing their familiar plate and cutlery can help bring some familiarity to their day.

Make sure that they have their medication on time. Set alarms. Some Parkinson’s Disease medications are time specific. By having their medication prepared in an alarmed pill box or bag nearby is useful so that it is ready, taken on time, and not lost in all the chaos of Christmas festivities.

Eating and Drinking

For anyone with Parkinson’s Disease, eating can be highly stressful. Symptoms can lead to extreme fatigue which can often cause difficulty in staying awake, process of eating and sitting at a table engaging with others. Tremors lead to great difficulty managing cutlery. Dexterity issues make it difficult to pick up food and get it to the mouth.

Urinary and bowel changes are common with Parkinson’s Disease and can cause distress, discomfort and often feel constipated leading to reduction in appetite and increase in symptoms.

For many, these symptoms can cause distress and embarrassment and increase levels of anxiety. Using adaptive cutlery and plates can help. They may already have these in use and is important to ensure that they have brought them with them.

Support to Eat

Weighted cutlery are designed for those with tremors. From experience, weighted cutlery can be too heavy for their arms and cause discomfort. Having lightweight chunky bendable cutlery is a good choice and have personally found these more successful.

A well designed Scoop plate is also very good for helping to get the food onto the spoon or fork easily and have suction bottoms to stop the plate moving. I highly recommend these.

Do they use a lidded cup? It may be that a straw lidded cup is used. Bringing their cup that they are familiar with can help reduce stress and allow them to drink in their familiar cup. Having the same cup they use at your home can ensure that they get regular drinks. This lidded cup is highly recommended by experience due to its good stability and multi lid offering both a sippy and straw based lid.

Recognising that they may not be able to or recognise that they need to drink needs to be in mind. The hectic day of Christmas and ongoing enjoyment can often lead to being overlooked. If you have Alexa it may be a good idea to put prompts on Alexa to remind you during the day.

If dementia is also an issue then it is even more vital that an adaptable spoon and plates are available as confusion and ability to process how to eat can lead to more assistance. It may be that you will have to feed them. Recognising the support they need for the day is vital to preparing Christmas for everyone and ensuring that the day can go a bit more smoothly.

Many families eat a lot more than usual at meal times on Christmas day. A full plate can be daunting for someone with dementia. A small amount on their plate and letting them eat at their own pace is helpful.

Family Support for Parkinson’s Disease and Dementia

Talking to family and friends who will be present at Christmas can help enable preparations and be more awareness. Delegating help and tasks to others can really make a difference to reducing stress for them and yourself and make for a smoother and more enjoyable day.

By keeping the day simple and familiar is the key. Many families have traditions and enjoy lots of family round for the day. For someone who has dementia, the whole day can become very confusing.

A Christmas tree and decorations can make their environment become unfamiliar and confusing. Lots of different foods and presents to unwrap can become overwhelming. Being mindful of the noise of Christmas crackers which can be unsettling. Consider buying no snap variety crackers. Christmas day is a day out of their normal routine.

Asking families to not wrap their gifts and to keep them simple is a good tip. Having a lot of goodies can feel familiar if they are used to having treats, but new clothes are not and can be overwhelming and confusing.

Including someone with Dementia can be helpful. Putting on Christmas music that they know and encouraging them to sing along to something they recognise can help.

Be Flexible

Christmas is a long tradition that many families enjoy and is very easy to get caught up in the traditions and how things have always been.

As Parkinson’s Disease and dementia progresses, things we have always done have to change as we adapt to the illness. Being flexible is having a plan B. Every day can be different and we have to adapt to the changes as they occur. As plan B stops working we have to move on to a plan C and so on.

Making family who will be visiting at Christmas aware of the changes is helpful. It may be that they do not remember their names or places; this is not personal!

Living in a Care Home

If they live in a care home, it may not be a good idea to take them out of the care home to the family home. The care home becomes their home with familiar surroundings. Not all care homes advise taking them home for good reason; that it becomes too stressful for them.

Asking the care home what their plans are for Christmas day is helpful as they may have restrictions on visiting times during the day so that all residents can enjoy their day.

Taking gifts in to the home a few days before is a good idea so that she can open them with staff or with you beforehand. Talking to family about the care home arrangements allows them to make their own decision on when they want to visit.

Depending on their stage of illness it may be that they have no concept of time or dates and therefore may not be aware that it is Christmas.

Knowing and accepting that your Christmas may be different to how it always has been and being able to make changes overall is key to making your Christmas more enjoyable. If it still doesn’t go to plan, accept that it is okay.

Not all Christmas day festivities go to plan in the best of families! If that means not having family over or visiting other family members then that is okay too. Try not to put pressure on yourself and practice a bit of self care for you.

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