How to cope when your parent has dementia

Coping when your parent has dementia

It can be very hard to cope when your parent has dementia as you watch someone who cared for you become unable to care for themselves.

Dementia erodes memories, causes confusion and alters behaviour and mood. Each person is affected differently and other symptoms include sleeplessness, agitation, paranoia and incontinence.

Family dynamics change as the parent’s ability to understand and relate to people alters. Your role as a son or daughter and their role as a parent is reversed. You have to cope with seeing someone who was once powerful and strong become vulnerable.

Here is a guide to help families cope with the many issues that arise when your parent has dementia.

Understanding dementia

If you suspect your parent has dementia or memory problems, you can arrange for a GP to carry out some memory tests and see how they respond to certain questions.

If they have already been diagnosed with dementia, find out more about the disease and the particular type of dementia your parent has. This will enable you to plan for how their mental and physical state is going to change as dementia is a progressive disease. It will affect their functioning on a daily basis.

Getting support for your parent

Being diagnosed with dementia will propel your parent into an uncertain world. It will make every day a challenge. There is a whole host of support services in the UK which can help them adjust to their new lives of living with dementia

• The NHS does have services such as memory clinics where dementia specialists can give a more detailed diagnosis than your GP and create a tailormade treatment plan. There is no cure for dementia. However your mum or dad may be able to get medicine to help manage some of their symptoms.
• There are also charities such as Alzheimer’s Society which signposts people to local dementia support groups via its online directory.
• Local Age UKs offer a whole range of classes and groups for people living with dementia.
• Dementia UK runs a free confidential helpline run by dementia specialist Admiral Nurses. They can give advice, information and support on any aspect of dementia.

Stress of coping and caregiving

As well as getting support for your parent, it is also crucial to get some support for yourself. This will help you to cope with the emotional strain of caring for your parent with dementia.

Caring for your mum or dad when they have dementia can be exhausting both mentally and physically.

• Remember to look after yourself and make time for yourself. Keep doing the activities you enjoy and find time to meet up with friends and family who can give much needed emotional support. The NHS and your local authority will be able to offer you options for respite care so you can take those much needed, valuable breaks.
• You can also seek support from charities such as Alzheimer’s Society which has a Dementia Support Forum. Here you can talk online to other people in the same situation as you and share tips and experiences.
• Those wanting to talk to someone on the phone can also contact the helpline at Carers UK.
• Admiral Nurses are there not just to help the person living with dementia but their families can also ring the free, confidential helpline.
• There are also local support groups for carers. You can find these on the Alzheimer’s Society website or Age UK.

It can be a ‘steep learning curve’

Shelle Luscombe, who lost her mum Sue and her dad Ian to dementia, revealed that watching her parents deteriorate due to the disease  “was soul destroying, heartbreaking, bewildering, upsetting, frustrating and a million other emotions all at once”.

She also found caring for a parent with dementia to be “a steep learning curve!”. She said: “You’re constantly trying to be one step ahead because decline with dementia isn’t linear. I was always trying to pre-empt what might come next whilst dealing with what was in front of me.

“The fact sheets give you advice and suggestions as to what to expect but because dementia affects everybody differently it’s really difficult to base your own experience on any one document. You have to work with what you’re seeing. I was constantly looking at different ways to navigate the situation.

‘Mum was in denial’

“Mum was in denial of her diagnosis which made it really challenging. She wouldn’t accept support or help, and struggled to acknowledge there was something wrong with her. She was often angry and stubborn and I’m sure very scared.”

This meant that Shelle, who now volunteers for Alzheimer’s Research UK, was “often walking on eggshells”. So Shelle had to find ways to support her mum’s everyday needs and “introduce care in clever ways”.

“My goal was always to provide the support she needed to keep her safe but without her realising she was being cared for. She’d been so fiercely independent all her life that it was difficult for her to accept that there were things she could no longer do.

“It’s an up and down journey, so one day all the neurons are firing in the right places; the next, you can’t work out which way up to hold the telephone. That’s really hard to watch.”

Keep talking to family members

Resentment can build up between family members when someone in the family has dementia as you may feel you are doing more of the caring and giving more than your siblings. So keep talking to your family about what you are going through. Ask for help with caring for your parent with dementia.

Discuss plans for the future in terms of caring for your mum or dad. This will help share out responsibilities and ease the burden.

Establish routines

Introducing a routine into your mum or dad’s daily lives will lessen their confusion and anxiety as it will make them feel more secure.

Regular times for meals, activities and bedtimes will give your parent a sense of structure. This will be comforting for them.

Make your parent’s home dementia-friendly

Vision and balance can be affected when a person gets dementia which can lead to falls. To prevent this, walk around your parent’s home and remove any tripping hazards. Put up grab bars and handles they can hold onto if they feel they need extra suppport.

Labelling drawers and cupboard will help them locate things in the house. They may forget what is inside the cupboards and drawers. Visual references like pictures of the clothes inside the wardrobe stuck on the wardrobe door can also help.

If the person with dementia does not recognise themselves in the mirror, remove or reduce the amount of mirrors in the house. Seeing a person they do not recognise in a mirror will distress them.

Focus on your parent, not the disease

Try and live life day to day and remember that despite their cognitive decline, your parent is still the same person who can feel happiness and sadness. Try to get them involved in activities they enjoy and make the most of what they can do and try not to dwell on what they can’t do. Keep the emotional connections alive by sharing music and looking at old photos.

It can be incredibly frustrating when your mum or dad gets dementia but try to be patient with them.

If they struggle to understand when you are talking to them, try using more simple sentences. Keep eye contact with them and listen to them. Don’t correct them or argue with him as this will only leave both of you unsettled.

You can’t predict how your parent’s dementia will progress so you will need to remain flexible and adaptable so you can manage the situation as it changes.

Accessing financial support

Caring for a parent with dementia can be exhausting mentally and physically. At some point you may need to call on professional help. In the beginning you could go down the route of getting in some home care for personalised dementia care and support. You can find out if your parent is eligible for help with paying for home care here.

You may find it hard to cope with your parent with dementia as the disease progresses and you may want to look at more intensive care such as live-in care or a care home.

You can read here about how to pay for a care home.

Legal planning

Dementia is a progressive condition and your parent’s ability to organise and manage their affairs will deteriorate over time. At some point they will lack mental capacity to make complicated legal decisions. So it is vital you put legal measures in place to protect them.

You should set up a Power of Attorney enabling you to make decisions over the health and welfare and the finances of your parent.

An attorney must always act in the best interests of the person they are making the decisions for and also consider their wishes and needs.

Charities like Age UK can give advice on legal planning and help you to deal with issues that may arise with dealing with a parent with dementia.

You are not alone

It may feel like you are alone as you navigate your way through the care system and have to cope with the huge strain of looking after your parent who has dementia. However there are a whole host of charities and organisations that can help with support and advice.

carehome.co.uk, the leading reviews site for care homes, has its own free helpline. If you have decided residential care is the best option for your mum or dad, members of the care help team can help you to find a care home that is right for their needs.

Paulina Frisby, team leader of the care helpline, said: “We find when we speak to people who are looking for a care home for their family or partner, there is a lot of frustration especially if they have only recently been diagnosed.

‘Still such a misunderstanding of dementia’

“There is still such a misunderstanding of dementia. Many people are given a diagnosis and then left with no support.

“We do our best to explain to families what the person with dementia could be going through.”

She added: “We get people ringing us who are very distressed about a relative of theirs who has dementia. If we connect with them we can end up crying on the phone when they are talking to us.”

However it can also feel “incredible when we help someone.”

She said: “You get goosebumps and a warm feeling that you have made a difference. We know we have changed someone’s life in a positive way.”

If you would like some guidance in finding a care home you can ring the care help team on 01488 501503.