Taking Care of the Carer

This post originally appeared in ‘Julia’s dementia blog‘ in October 2017. We are really grateful to Julia for sharing her personal story with us and hope that it will help other carers in the same situation.

Take Care of Yourself First

Whether you care for a relative with dementia at home, visit them in a care home, or are a professional carer you need to be mindful of the potential toll on your own physical and mental health. It’s helpful advice that I dismissed. I suggest you don’t make the same mistake.

Carers taking care of ourselves

 

 

 

 

 

When I started caring for my mother, I was touched by kind messages from people I hardly knew telling me to take care of myself. I struggled to understand why there was so much emphasis on the carer. After all, it wasn’t me who was desperately anxious, confused and vulnerable as my mother was. And I already looked after myself.

Above all, I wasn’t the primary carer (at that time); my mum lived in a care home. I didn’t face that burden. I just visited my mum. I was almost embarrassed at the idea I might be at risk….

Three serious infections in two years

…And yet, perhaps it was no coincidence that since my mum’s problems started, I had three serious infections, two of which triggered sepsis, and resulted in hospital admissions. Normally, fit and healthy, my first infection was within a couple of weeks of my mother being admitted to hospital. For me a urinary infection, quickly moved to my kidney, and affected my liver. I was cared for in the same hospital at the same time as my mother, though she was in a locked ward.

My last infection was severe pneumonia which led to pleurisy, and infections of my gall bladder and liver. I remained in hospital for 10 days, until I could breathe enough oxygen into my lungs unaided. I think the trigger for my illnesses was the huge emotional turmoil of caring for someone you love, someone who is so deeply distressed.

Feeling emotional and down

One weekend, I found myself feeling flat and weary during a visit with mum. I hadn’t intended to spend five hours with her that day, but I didn’t like to leave as she seemed particularly needy and helpless. That evening I had planned to restart a fitness class which I had neglected. I was looking forward to it, but while I was with mum, I started feeling physically tired and a little unwell. I talked myself out of the class, although it was probably the tonic I needed.

This ‘down’ feeling came from nowhere and sometimes took hold of my mood for several days at a time. It’s not unusual. Everybody feels blue from time to time. The problem was that someone I loved was living in a nightmare.

The cognitive impairment caused by the disease made it hard for mum to make sense of everyday things, her insecurities were amplified, her self-esteem assaulted, and she often ended up feeling scared and vulnerable. On top of that she was in a strange place, that because of dementia, never became familiar. As she often said to me “I am scared out of my pants”.

Physical and mental health toll

Caring for someone with dementia can have impacts you wouldn’t expect. “Carers of people with dementia have increased risk of developing dementia,” according to dementia care expert, Teepa Snow.

“Compared to non-caregivers, carers for people with dementia visited their GPs 50% more and took up to 86% more prescribed medications,” according to Alzheimer Scotland.

Family caregivers of people with dementia are “often called the invisible second patients”, according to an article in Dialogues, a clinical neuroscience magazine. “The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship.”

literature review on the topic  concluded, “It appears that the majority of dementia caregivers are sufficiently disturbed to be of concern to the mental health professions.”

Reaction to emotional distress

Without the responsibility of managing mum’s daily needs, I didn’t face the 24-hour physical and practical job that some families do. The major impact for me was at an emotional level. I felt guilt and sadness. I was haunted by the thought she would be better off in her own home if only I was willing to support her. My sadness about her ongoing distress was at a deep and visceral level.

I was initially reluctant to connect my illnesses, with the situation my mother was in. Having subsequently learnt about the clear connection between mind and body, I think there is no getting around it. It is likely that my own emotions increased my susceptibility to illness.

So, although I already took good care of myself and my caring role at that time was minimal, I became more conscious of symptoms and moods, and more dedicated to preserving my physical and mental health. I learned to seek medical advice early if in any doubt at all. My persistence in getting medical attention during my third infection may well have saved my life. Not trusting my second diagnosis, I admitted myself to A&E where I was soon diagnosed with double pneumonia which quickly led to sepsis. In the UK, over a fifth of the 250,000 people who are affected by sepsis every year, die from the condition.

Take care of yourself

If your primary concern is your loved one, don’t forget you won’t be much use to them if you become ill. Teepa Snow, suggests you won’t be good company either, “If you’re in survival mode, you are not the kind of person that someone with dementia wants to be around!”

Even if you don’t think you are susceptible to physical or mental health strains it makes sense to be proactive. Alzheimer Scotland has put together a very useful guide for carers called ‘Looking After Yourself’ (PDF). I include the top tips here, though the whole document is well worth a read:

  • Exercise: Keep up or take up exercise and outdoor walking, as far as possible. It helps you to stay healthy and relieve daily stress. You may even be able to do some activities with the person who has dementia. Exercise is also very good for people with dementia, as I highlight in this post about tackling anxiety and depression.
  • Sleep: Regular sleep and rest are essential. If you don’t get enough rest it can lead to depression and affect your health. A leading neuroscientist recently highlighted a link between poor sleep and increased risk of developing dementia.
  • Health: Watch out for signs of your own physical or mental distress. Keep an eye out for symptoms that may seem benign at first. Don’t be afraid to get them checked out with the doctor. If you find you’re not sleeping, or constantly feeling down go to your doctor.
  • Relax: Try to take time out to do the things that you find relaxing such as getting a massage, doing yoga, or listening to calm music.

Breathe

Teepa Snow has advice about how to manage those stressful moments when you are with the person you care about, in the first of a great series of short videos for carers.  Take “three deep cleansing breaths” when you find yourself becoming fraught or distraught. This is important to address our physiological reactions to pressure. When we start feeling stressed our bodies tense up and our breath becomes shallow. We breathe in, but not out, as we go into survival mode. This stops us getting enough oxygen into our brain, which affects the emotional control centre and the front part of the brain that helps us to make good decisions. This short little exercise that you can do again and again, helps you to take care of yourself, and enables you to take better care of your loved one. Watch the video. When my mother was feeling anxious, I led her through a version of this exercise too.

Julia Powell now runs mindfulness courses and coaching for carers and people living with dementia. Contact her at julia@juliapowell.co.uk to be added to her mailing list for upcoming courses.

 

Interior Design in Care Homes by Jacqui Smith

Jacqui Smith is an experienced healthcare designer, running HomeSmiths with her husband, David.  She is an SBID Accredited Designer and Chair of her local Dementia Friendly Community.  Having permanently lost the sight in her left eye in 2012, Jacqui has personal experience of visual impairments and the role the built environment plays in supporting people with sensory loss.

Jacqui highlights the key elements of interior design to consider when planning and designing spaces for older people in care:

Interior Design in Care Homes – Where to Start?

The built environment plays a key role in the health and well-being of residents, affecting both their physical and mental health.  Good design can make the world of difference to how a resident, carer or relative will feel in a space. 

Like all design, function is the most important consideration.  A room might look beautiful but unless it serves the needs of the people spending time in it, and the furnishings and finishes have been chosen with practicality in mind, it will not “work”.  As we age, our senses deteriorate, and some people will experience cognitive impairment so the design must support these needs and enable residents to live as independently as possible for as long as possible.

I am a firm believer that care homes should be warm and homely, environments which residents can relate to and settle in quickly.  Whilst yes, the designs should have impact and an element of aspiration, I do not subscribe to the idea that care homes should emulate the 5-star hotel aesthetic.

 

Light

My starting point would be to maximise natural light wherever possible.  Window treatments should be dressed back from the window and at the same time allow strong daylight to be filtered when necessary, to avoid glare.  Well thought through artificial lighting is a worthwhile investment.  The wrong type of light can have an enormous impact on a scheme and greatly affect the colour rendering of furnishings and wall colours, and also how people feel in a space.  I see many care homes fitted with LED lights on the correct assumption that after the initial outlay, maintenance would be minimal, yet the fitting is a cool blue light LED which renders any furniture or finishes with warm red tones a far from uplifting muddy brown.  Light fittings should be diffused to avoid glare and flexible task lighting is a worthwhile addition to a scheme enabling residents to adjust light levels to suit their individual needs.

Lighting can also affect our body clock.  Different colours of light have varied wavelengths which the human body responds to in different ways.  The cool blue light of the morning kick starts our body clock; the presence of sunlight stimulates the brain to secrete cortisol which promotes a state of alertness, preparing us for the day.  As the light changes through the day and then fades to the warm yellow of dusk, we receive the cue to start thinking about winding down and ultimately falling asleep.  The science behind this cue is the hormone melatonin which the brain releases towards the end of the day, which causes us to feel drowsy.  White and blue based lights will inhibit the secretion of melatonin which will consequently interrupt our body clock, upsetting our usual sleep pattern.  So, a cool blue light in a care home dining room at the end of the day is not conducive to a relaxed and restful evening for residents.  Difficulties regulating the body clock are common in old age and particularly significant for people with dementia, so getting the lighting right is essential.

 

Colour Contrast

If I had to pick one thing which can make a huge difference in supporting independence in living environments for older people, it would be colour contrast.  Contrast between objects helps residents make sense of their environment and whilst it’s vital to apply this principle for people living with dementia, it also plays an important role in supporting those with age related sight issues.  Ensuring that there is visual contrast between critical surfaces will help a person with poor sight, be it through dementia or old age, navigate their environment as easily as possible.  Skirting painted to contrast with the floor will outline very clearly where the floor ends, and the wall begins.  Architrave painted to contrast with the wall will define where the door is.  For two surfaces to offer enough contrast they must have a 30-point difference in their LRV, Light Reflectance Value which is a measure of the amount of light which a surface reflects back into a room where the lighter the colour, the higher the index.  The same logic applies to light switches and fixings like grab rails in bathrooms.

Flooring

Whilst colour contrast can help define a room, contrast in adjacent flooring surfaces should be minimal.  A dark threshold strip or a dark floor mat against a paler toned floor can appear like a step to a person with dementia and might present a trip hazard.  Similarly, dark door mats can, to some people, look like a hole.  Ideally the flooring throughout the home should be the same colour regardless of the surface.

So, colour contrast comes into consideration in choice of surfaces, but the finish of those surfaces is also important.  Hard flooring must be anti-slip especially in wet areas such as bathrooms where an even higher anti-slip level is required.  It’s also important to select finishes that do not cause glare so better to avoid polished surfaces, choosing matt and brushed finishes instead.

 

Acoustics

Poor hearing is something that affects many older people and can in some cases lead to isolation and increase the speed of cognitive decline.  Interiors should be designed with acoustics in mind, maximising sound but minimising noise.  Think about position of kitchens and lifts in relation to resident areas and consider finishes choices such as acoustic flooring, noise absorbing window treatments and furniture such as room dividers which can help.

Decor and Furnishings

Furniture and décor should be relatable, and the layout of the room should encourage social interaction with clusters of seating, ideally with varying seat heights so that residents can select a chair which most meets their comfort needs.  Corridor seating is important, providing residents with resting places as they move from one part of the home to the other, encouraging them to be independent and sociable.

Colour itself plays an important role in designing for health and well-being.  The correct choice of colour can make an enormous difference to how a person experiences being in a certain room, affecting how they feel, behave and interact with others.

 

 

Art and accessories are often seen as a ‘nice’ to have but I do think they are an important part of a home; not only do they make it more domestic in feel, they can also be used to help residents remember where they are, as many people will navigate by objects rather than words or colour.  Which brings me on to wayfinding which should be enough to aid navigation but not ‘overkill’.  Wording on signs should be clear with an easy to read choice of font and good contrast; light text on a darker background is preferable because it’s easier for the ageing eye to see than dark on light.

By Jacqui Smith

Homesmiths Interior Design Services

 

 

Designing Clothes with Dementia in Mind

Innovations to improve quality of life 

As a social enterprise, Mycarematters actively supports small companies and organisations whose mission is to improve quality of life for anyone with long term health issues and their care giver/partner. Sara Smith neé Harris’s own experience of caring for a loved one with dementia led her to create her own clothing range designed to overcome many of the difficulties she had encountered when assisting with dressing and struggling to find stylish but practical alternatives.

The Story of Roaringly Precious

Roaringly Precious is an inclusive clothing company, specifically designing clothing for people living with cognitive and mobility challenges. The company was born when Sara, designer and founder, spent time caring for loved ones facing the challenges of dementia. She became frustrated with the lack of fashionable, easy to wear clothing available to help people maintain their sense of style and independence whilst providing for their specific needs. She decided to use her degree in textiles and costume design to do something about it.

All the Roaringly Precious garments have subtly built-in adaptations to make dressing easier. They use specific sizing rules, with loose fit styles that still fit and flatter the body. Some examples of their adaptations are larger openings without low necklines, easy fastenings and garments that are made to be worn either way so they never look back to front. These changes improve the dressing experience and promote independence and dignity.

We believe every person deserves the right to feel good about themselves and the clothes they are wearing.’

They consciously offer a smaller selection of styles but in a wide range of fabric choices so the clothing remains familiar to wear, whilst allowing people choice to express their taste and colourway preferences. They are a person-centred brand, interested in only providing purposeful products that will improve quality of life.

We work to support peoples’ abilities and skills, empowering and enabling them so their opinions are heard, their feelings are known, and their style and individuality is seen. We endeavour to provide inclusive clothing that solves issues, eases struggle, and provides people with a sense of comfort and enjoyment.’  Sara Harris

If you’d like to visit Roaringly Precious to see their latest clothing range please click here. And if you’d like to place an order, use Code MCM5 to claim your 5% discount.