Covid-19 impacting efforts to find a cure for dementia

Photo by jesse orrico on Unsplash

Covid-19 is also doing long-term damage to efforts to find a cure for dementia.

Every day, Diane Evans (not her real name), calls her 85-year-old mother, who lives on her own in Wales from her home in London. Every day she asks her mother if she is remembering to wash her hands regularly and to keep a social distance from other people. Every day, her mother is perplexed by the question.

Every day the facts of life during the coronavirus epidemic are explained to her yet again, with an heroic absence of exasperation.

Every day Ms Evans worries that her mother will put herself at unnecessary risk of contracting the Covid-19 virus.

She also worries that the condition her mother already lives with is getting worse, as she loses the social contacts and routine that shaped her life. Her mother has dementia, a degenerative and incurable condition that affects perhaps 850,000 Britons and 50m people worldwide. It has various causes and a wide range of severity. It may start as a “mild cognitive impairment” forgetfulness; the occasional “senior moment”. But as it progresses, it attacks mental agility and gnaws away at memory. Eventually, it renders people incapable of looking after themselves, even if physically they are up to it. They will lose the ability to read, to cook and to shop. They may forget to drink and become dehydrated, or become incontinent. At times they may suffer delusions, or become frightened or angry; at others simply subside into an apathetic slump. They will require care for most of their waking hours, and often supervision when they sleep.

People with every stage of dementia are at particular danger from the virus not just because of the difficulty they may have in understanding the threat or in remembering safety precautions. They are also likely to be subject to other risk factors. The most obvious is that dementia is predominantly a syndrome of the elderly, the group for whom covid-19 is most likely to be fatal. A small minority of people with early-onset dementia develop symptoms in their younger years. But no one doubts that it becomes more common with age. By some estimates, 2% of 65- to 69-year-olds have dementia, and its prevalence doubles every five years to the age of 90. In another widely quoted estimate, between a third and a half of 85-year-olds have dementia.

The condition has a variety of causes. The most common is Alzheimer’s disease, accounting for between 60% and 80% of cases, but there are dozens of other types. And, though all kinds of people in all states of health can develop dementia, it does appear to be correlated with other conditions that make people vulnerable to infection. Those who are overweight, depressed, smoke, have high blood pressure or diabetes and do not exercise have a higher risk of dementia, as well as of physical ailments.

Looking after people with dementia is a hands-on, labour-intensive task. For those at home, that can become almost impossible if social-distancing guidelines are adhered to. And much of the usual support system, regular visitors and day-care centres, for example—will be unavailable.

Technology can help a bit. Singapore, for example, has experimented in some public-housing blocks with a system that sends neighbours or family members of the vulnerable an alert if, say, a tap in a washbasin has not been used for a while. Researchers at the Care Research & Technology Centre at Imperial College in London are working on taking this much further. Infra-red and radar sensors installed in the homes of people with dementia, or devices worn by them as watches or hearing-aid-type brain-scanners can provide data giving early warning signs of trouble.

There are also, of course, apps for dementia. “Refresh Player” and “Refresh Studio”, from a tech firm called How Do I?, offer “personalised memory support”, including videos on how to perform day-to-day tasks, such as run a bath or boil a kettle, which appear when a smartphone taps a sticker on the once familiar but now sometimes baffling object involved. Japan is pioneering the use of robotics in caring for the elderly. Examples include toys such as Paro, a furry seal used as a “therapy animal”, and Pepper, a humanoid robot deployed in hundreds of care homes to play games, hold childish conversations and demonstrate exercise moves.

But for most people in most parts of the world, the best that can be offered people with dementia at home and their carers is a daily knock on the door, or a phone call, like Ms Evans’s, and Post-it notes of helpful remindersto wash your hands, for example. So long as they are physically healthy, now is not the time, in many parts of the world, to contemplate sending someone with dementia into a care home. Many are operating strict isolation policies, letting no one in. And many have seen outbreaks of covid-19 infection. A study by academics based at the London School of Economics estimated that in a number of European countries, about half of covid19-related deaths have been in care homes.

Many carers of people with dementia who have been unfortunate enough to become infected with the virus see hospitalisation as a very last resort for their charges. Even Alzheimer’s Disease International, an advocacy group, reports in a position paper this month that “people over 80 who have other illnesses and need admission to hospital with covid-19 are least likely to benefit from going into hospital since their admission has associated risks.” The experience can be bewildering, and lead to delirium, a hallucinatory state of confusion and panic. “It’s pretty frightening for most people,” says Gill Livingston, professor of psychiatry of older people, at University College, London, “but even more frightening for them.” There is also the fear that, when it comes to triage—the selection of patients for scarce medical resources, the elderly with dementia will find themselves at the end of the queue, based on questionable assumptions about the patient’s underlying frailty and quality of life.

Besides the short-term dangers the virus has brought to those coping with dementia, there are fears it could do longer-term damage to efforts to improve care for the condition. One reason for this is shared with many physical maladies: that, during the emergency, people are wary of seeking diagnosis or help, for fear of infection, or of laying claim to health-care resources others need more urgently. Professor Livingston says that the “memory clinic” where she works decided to shut, as the doctors concluded “it was more risky to see people than for them not to have a diagnosis for a short period of time.” But the longer the delay goes on, the greater dangers people living with undiagnosed dementia pose to themselves, and perhaps others, if, say, through forgetfulness they start a fire, or continue to drive when they can no longer do so safely.

Scientific research into dementia has also been disrupted by the pandemic. Miia Kivipelto, a Finnish neuroscientist who led a pioneering study showing how changes in people’s ways of life could slow or arrest cognitive decline, has had to stop all the follow-up research, as it is impossible to conduct in a world of self-isolation. Similarly, Biogen, an American pharmaceutical company, has had to delay its attempt to gain approval for aducanamab, a potential treatment for Alzheimer’s. Besides the difficulty in conducting clinical trials, the company has suffered a covid-19 outbreak. So many Alzheimer’s drugs have failed that optimism about this one was at best cautious, but for some of those affected by the disease, it was a light at the end of a very long tunnel.

Before Covid-19, campaigners for dementia research and dementia care had reason to believe that they were making progress. Their argument that dementia is not an inevitable feature of ageing but a disability that deserves to be treated as such was widely accepted. So too was their case that dementia represents a real global emergency.

As life expectancies lengthen, especially in the developing world, the numbers of people with the condition will shoot up, to around 80m by 2030 and 150m by 2050. As population growth slows, there will simply not be enough people to care for them. No country has a good plan for how to deal with this problem, or how to finance the care of such large numbers of people. Optimists point to the current pandemic to argue that it shows how much can be done when the scale of an emergency is recognised. Perhaps more realistically, it has given yet another reason for dementia to slip down the list of global priorities.

Source: The Economist

Four letters that make communication REAL

Four letters that make communication REAL

“A diagnosis of dementia for a person is also a diagnosis for the whole family.” 

Anon

Dementia can be very hard to come to terms with. Hard enough for the person diagnosed of course, but also hard for family carers, who must watch the relentless deterioration of the person they love, usually over many years, with no hope of reversal. They must also adjust their own behaviours accordingly. In many ways, dementia is a slow, ongoing bereavement process, of loss of a loved one before the person’s death and often means massive and often exhausting changes to the carers’ own lives.

Dementia can be scary and disorientating for the person with the diagnosis, often including

  • short-term (working) memory loss
  • gradual loss of awareness of basic things like eating, drinking and personal hygiene confusion as to their whereabouts or who people are — who they may have known for much of their lives
  • loss of life skills like reading, language and vocabulary
  • rapid mood changes, anxiety, depression
  • depleted motor skills and mobility,

And that’s just for starters.

All these aspects of dementia can be frightening, frustrating and mystifying for the person and saddening (and sometimes maddening) for relatives.

And just when things may seem to have settled into a steadier pattern, the person’s condition may decline further and the care goal posts will move yet again.

Despite this long and pessimistic list — and even though dementia cannot be cured or reversed, our own behaviour can make a big positive difference.

A person can live well with dementia for a long time and with changing attitudes in dementia care, the experience does not have to be unremittingly negative

Happily, in recent years, good communication is slowly being recognised as one of the most important and essential ways of helping the person with dementia and their family to deal with the condition.

I developed the REAL Communication Framework in 2003 as a response to my own observations, worries and concerns about my mother’s condition and her care. The four letters of REAL stand for Reminiscence, Empathic engagement, Active Listening and Life Story. These are the four letters create the four pillars of good communication with a person living with dementia.

Mum had vascular dementia and Alzheimer’s disease for about ten years. I had noticed how her friends gradually fell away, how people were nervous to engage her in conversation or worse, ignored her and spoke through me. I had noticed how impatient my father could be with her sometimes, the woman he adored and had lived with happily for over 60 years — and how all of us in the family felt ‘at sea’ with the experience.

Here is the REAL framework, which surrounds the person with connection and meaningful communication – and all from four letters.

Dad wasn’t coping and Mum found herself in a care home. I noticed that the other residents and their families had some similar issues to our own. I saw that Mum was increasingly challenged to express herself. Of course, the carers knew almost nothing about her and had no tools to help them get to know her better.

First off, I made her a life story album ‘This is My Life’ to help them (and me, as it turned out) to get to know her a better and to give her opportunities to be the expert, in remembering and talking about her life.

Unexpectedly, it became the most important item in her life. Nothing fancy, you understand, just a pictorial chronology of her life with some simple autobiographical captions; for example, “Me in the garden dancing”, “Our honeymoon in Bournemouth”, that sort of thing. We looked at and enjoyed the family photos continually over the seven years she lived in a care home.

I was on a voyage of discovery and she was sharing her experiences as a girl and as a younger woman, — memories I knew very little about, a person who seemed so familiar, yet I hardly knew.

In finding out about her youthful years, we bonded more deeply. This growing closeness helped me to understand better what she might want in the here-and-now. Like all of us, her outlook, needs and expectations had their foundations in her earlier life.

We would watch DVDs together which I knew would make her laugh. In the earlier days we might watch episodes of one of her favourite comedy TV programmes like Dad’s Army. Later, she couldn’t follow the plot lines and even Arthur Lowe’s pompous disdain no longer seemed so funny. Then we moved on to The Marx Brothers.

Nothing like a bit of slapstick for some instant shared hilarity. Her favourites were A Night at the Opera and Duck Soup…

On warm days, we might sit in the care home garden in the sunshine and talk about the birds and bees and flowers and trees and remember her tending the garden at home (mostly endless weeding) and chuckle about Dad in what was his favourite haunt, wearing nearly threadbare gardening clothes.

And while she still could, we talked. About growing up and then bringing up four children, about the hard labour of housework, about life during wartime and dad’s ‘courting’. I admired her endless capable creativity in the house and her delicious cooking. Through sharing her reminiscences and with some empathic, concentrated listening from me, over time, she seemed to be more settled in the confusing, wobbly world she found herself in — and the long list of negatives seemed just a tiny bit shorter.

When these four letters R-E-A-L are in place, anyone can have an easier and more meaningful relationship with a person with dementia and help make it an experience that can be borne more lightly by all.

You can learn more about the REAL Communication Framework and how it helps to transform the lives of people living with dementia and their caregivers here>

How does good communication help the person with dementia? (Part Three)

Part Three: Paralanguage

“They won’t remember what you said, but they will remember how you made them feel” 

Carl W. Buechner

When any of us communicate with a person living with dementia, we will both be using non-verbal ways to communicate beyond the words.

These unconscious methods of exchange: body language and paralanguage, may be overt or subtle, but they are always part of the mix. They help to reinforce what the other person — or we are saying and help us to understand one another better.

Can we cross into the world of the person living with dementia, with all its confines and limitations, rather than expecting them to fit into ours?

Our own reactions may inadvertently add to the person’s lack of mental capacity. I have witnessed many conversations between a person with dementia, a caregiver and another, where the caregiver answers on behalf of the person, or completes their sentences for them — all meant kindly, with no intent to harm, but disabling to the person they care for, nonetheless.


For a person with dementia, feelings are often uppermost. In situations in which they feel fearful, anxious, bored, confused, frustrated, in pain or angry, the feelings of isolation and/or helplessness that the person experiences may find different outlets. The words they then use may not relate to the actual conversation, but instead, include those that reflect familiar, well-rehearsed social norms, or those that transmit their fear, dissatisfaction or frustration at the challenges they are facing.


A person might even swear, despite their normal good manners. They may use paralanguage to communicate their feelings, bypassing words altogether, meaning that petulance, physical force, annoyance or anxiety spill over; or conversely, they may retreat into detachment and passivity.

“The single biggest problem in communication is the illusion that it has taken place.” 

George Bernard Shaw

 Caregivers often develop highly nuanced paralanguage skills with those they care for, in order to stay more in tune with them.

When a caregiver enters into the person’s perceptual world with attentive observation, curiosity and empathy, the effect of and feelings about what is happening matter more than the words spoken. Let’s call this “super-awareness”. This deeper engagement makes it easier to identify, understand, respond to and reduce behavioural expression that has been created by negative, uncomfortable feelings.

Those who listen keenly, observe astutely, mirror accurately and understand thoughtfully, can assist in enabling the paralanguage of a person living with dementia, empowering the person to communicate and participate more effectively and make their lives more meaningful as a result.

We need to understand how challenging it can be for a person living with dementia to understand and relate; and how disempowering it is for the person to be judged from a purely cognitive viewpoint.


The heart of good caregiving means being super-aware and being able to “read the person” accurately. To do this well, we need to be present, listen not only with our ears but also with our eyes and nose. Above all perhaps, we need to listen with an openness to hear beyond the words the person is saying. It is only then that we become thoughtful enablers for them, to nourish and enrich their lives.

How to communicate well with someone living with dementia (Part Two)

Photo by Nick Fewings on Unsplash

 

Part Two: Words aren’t everything

The Language of Dementia

Unfortunately, speech and language deterioration is almost inevitable for a person living with dementia. The reasons are multifarious — among others, the person’s natural language and vocabulary are increasingly challenged by reduced mental capacity. Reduced brain-processing power means that they may struggle to understand what is being said to them. Loss of short-term memory makes it harder for them to orientate themselves in a narrative, or in conversation. They may be unable to respond at we would consider to be a ‘normal’ speed. They might return to using another language learnt in their childhood.

But words aren’t everything

We can communicate better with a person living with dementia by using overt and subtle, non-verbal language that conveys meaning beyond the words — especially if it mirrors theirs. Mirroring non-verbal cues helps to give clarity to our engagement, making it easier for us to understand one another.

Over the years, I’ve heard a number of stories of people living with dementia who have become newly attached, or antagonistic to another person because the person reminds them of a family member or friend they once liked or someone they disliked. It is often something in the tone of the person’s voice that has created this attraction or repulsion.

And it is not just what we say, but how we say it — our tone of voice.

Tone of voice matters, because it helps us to express the feelings behind the words we use, and may reflect among other things, our social culture, where we come from, our age, social status, education and command of language, our sense of ourselves, our attitudes, our state of health and our current mood. The timbre of our voice may help or hinder our connection with someone, even if we may be hardly, if ever, conscious of it.

Over the years, I’ve heard a number of stories of people living with dementia who have become newly attached, or antagonistic to another person because the person reminds them of a family member or friend they once liked or someone they disliked. It is often something in the tone of the person’s voice that has created this attraction or repulsion.

What are the ingredients that make up tone of voice?

These include natural vocal musicality, pitch, depth and intensity, the clarity and sound of our words, the accentuation we use, the speed at which we speak and more generally, the personality and outlook we convey by these means.

Even the simplest of questions, such as “How are you today, John?” may be imbued with a range of meanings depending on the tone of voice used, from genuine authenticity to patronisation, from positivity or cheeriness, to sadness or negativity. How many underlying meanings are you able to convey, just by changing your tone of voice and accentuation in the sample question?

Being more aware of how we sound can help improve our relationships with everyone

How to communicate well with someone living with dementia (Part One)

Photo by Harli Marten on Unsplash

 

Part One: Beyond the words

“Nonverbal communication forms a social language that is in many ways richer and more fundamental than our words.” 

 

Leonard Mlodinow

Body and paralanguage always speak louder than the words we use.

When we are alert to these, communication can be more effective, helping us to better understand the main — and also the underlying messages being conveyed.

When talking with a person living with dementia, they are particularly important to understand, for a few reasons. Firstly, the person’s reliance on non-verbal communication may accelerate as their natural language skills become increasingly compromised by the condition. Secondly, their sense of self alters subtly over time. Thirdly, the speed at which the person is able to process and absorb information is reduced. Finally, emotional feelings may rise to the surface (sometimes quite unexpectedly) in situations that challenge them in some way. All these facors contribute to how the person is able to hear, listen and respond.

Approximately 60% of our interactions use non-verbal communication.

These include proxemics (the space between us), kinesics (our body and head movements), hand gestures and posture. Facial expression and eye contact are key, of course. Perhaps crucially, a person’s tone of voice, intonation, pitch and speed of speaking, hesitation noises, gestures and facial expressions, make a significant difference to how we perceive both them and their message. We rely more heavily on this paralanguage to make sense of the world and our experiences than we might realise, or like to admit.

For any person, a diagnosis of dementia can feel like the beginning of the end.

Hardly surprising perhaps, given the prevailing, dismal medical model with which dementia is often viewed: as a journey of emptiness and inexorable physical and mental decline.

This depersonalised stereotyping over-simplifies the experience, presenting a one-dimensional view of personhood, overly dominated by cognition and short-term memory loss. Of course, as the disease progresses, the person’s thoughts and words inevitably become more tangled and confused.

However, a broader (and more humane) definition recognises that a person is far more than their thoughts alone and that together with their many long-term memories and experiences, the essence of the person remains, despite changes to the brain.

To keep well-connected to a person living with the condition, we need to become increasingly attentive to their non-verbal clues — as well as our own. We need to try to be more aware of what we are both communicating, beyond the words.

The 10 signs of Dementia

Ten signs of dementia and ten questions you could ask yourself

Anyone might develop dementia.
Here are ten questions you could ask yourself:
 
1. – Are the changes you have observed in the person new?
2. – How long has the person had the symptoms?
3. – Could they normally manage their household and self-care before?
4. – Are their normal personal routines still in place?
5. – Are they forgetting appointments – or medications?
6. – Are they able to make and keep work appointments or social arrangements?
7. – Do they ever get confused as to their whereabouts?
8. – Have you noticed any differences in their dress or behaviour?
9. – Do they seem to be less motivated?
10. – Does the person seem distracted, or vague? 
 
If you suspect that the person has some cognitive impairment that might lead to dementia, you might consider:
 
• An MMSE and/or additional cognitive tests
• Reviewing the person’s medication
• Considering referring the person for neuropsychological testing or a geriatric assessment
• Assess other reversible causes/factors of memory loss: CMP, CBC, thyroid function tests, vitamin B12 & folate
• Asking the doctor to arrange an MRI scan.
 
Thank you to Unsplash and Evan-Dennis for the image.

Chatterbox groups

chatterbox groups

Chatterbox Groups

Being listened to matters. People living in care homes need meaningful conversation every much as do we who live independently – it’s part of our wellbeing.
 
In a care setting, if a person’s dementia is advanced, staff may struggle to engage with them. Few carers have any training in meaningful conversation – added to which, their ages, life experiences and possibly social cultures may be very different. 
 
According to a study by Washington University in St. Louis and the University of Arizona, outgoing, gregarious people who have deep, meaningful conversations also have happier lives. People who spend less time alone and more time talking with others have a greater sense of personal well-being, suggests the study, published in the journal of the Association for Psychological Science. Co-author Simine Vazire PhD, assistant Professor of Psychology in Arts & Sciences at Washington University says, “having more conversation appears to be associated with a greater sense of happiness among the people in the study.” The happiest were those who engaged often in more meaningful and substantive discussions, as opposed to idle chit-chat and small talk. 
 
This finding is also true of people living with dementia. When we value people’s histories, co-incidentally, we help give them a kind of meaningful future. If we fail to listen to their rich life experiences, we fail to value them. Stories of learning how to make do, mend and keep your chin up in challenging times are as relevant now as they ever were. It can be oddly comforting for us to hear the experiences of a person who has ‘come through’ with a longer perspective on life.
 
Since 2015, it’s been a privilege to facilitate regular conversation groups with residents at a London care home, based on the principles of REAL Communication (Reminiscence, Empathic engagement, Active listening and Life story) and the Chatterbox cards. The sessions last for about an hour each and take place twice a month. Four or five residents with advanced dementia attend the first group and about ten people with cognitive impairment but whose communication skills are still relatively intact come along to the second one. 

A four-month trial proved so successful that they have continued ever since. The stories people have shared have helped us to map their life stories in a way that a more formal assessment simply cannot. Our thoughts, experiences and memories rarely follow a chronological path. In capturing them as they are sprinkled throughout the sessions, we have been able to build a more complete – and interesting picture of each person. This has then been translated into more focussed care.

Chatterbox Groups

Since 2015, it’s been a privilege to facilitate regular conversation groups with residents at a London care home, based on the principles of REAL Communication (Reminiscence, Empathic engagement, Active listening and Life story) and the Chatterbox cards. The sessions last for about an hour each and take place twice a month. Four or five residents with advanced dementia attend the first group and about ten people with cognitive impairment but whose communication skills are still relatively intact come along to the second one. 


A four-month trial proved so successful that they have continued ever since. The stories people have shared have helped us to map their life stories in a way that a more formal assessment simply cannot. Our thoughts, experiences and memories rarely follow a chronological path. In capturing them as they are sprinkled throughout the sessions, we have been able to build a more complete – and interesting picture of each person. This has then been translated into more focussed care.

SCIE have great resources – and here’s why

SCIE have great resources – and here’s why

By Sarah Reed 17 June 2013

I recently tweeted that SCIE have great resources – and here’s why:

We’ve just celebrated Carers Week 2013, and it’s important to remember that getting anything right in meaningful dementia care for a person can be a challenge. The cognition, awareness and linguistic goalposts are continually on the move and the very personal and unique nature of the condition is challenging.

Help is at hand. The lovely people at SCIE have invited me to write this opinion piece after I tweeted “@SCIE_socialcare is probably THE best care resource on the web – excellent in every way! Thank you.”

I really meant it. The resources on the site are extraordinary. Want to know more about reablement? They’ve got it. Need guidance on how carers can work with care staff over dementia care? This is where you’ll find it. Keen to up-skill yourself in co-production? Here’s the seminal advice.

SCIE has gathered a stellar group of care specialists and persuaded them to share their deep experience and knowledge on a wide range of subjects, which any carer can use whether working professionally or in an entirely domestic setting with a family member of friend. This is where you’ll find some of the most expert trainers.

I publish Many Happy Returns’ “conversation trigger” Chatterbox 1940s and 1950s cards for people with dementia; I also run REAL Communication Works™ skills development workshops, to promote better interaction with people with dementia for health and social care care-givers, and University students. The participants are often thirsty for knowledge and it’s great to know that I never need to swamp them with paperwork to support the programme. I just point them in the direction of the SCIE website. Job done –and a few trees saved, into the bargain!

And when writing articles or developing other resources of my own, it’s vital to get it right in every respect, so the SCIE website is my first port of call to check that my point of view is supported and endorsed by the best of the best-practice experts.

SCIE always remember the people they serve – the people who use services and their carers. It’s good to be reminded and as growing numbers of people are caring for their families at home, this is more important than ever. Here’s the story of one such couple; they happen to be my parents.

My Dad was a stiff-upper-lip kind of man

When a loved one develops dementia, those closest to them are likely to experience feelings of confusion themselves, as well as anxiety, guilt, grief and bereavement – even before the person dies, as the illness progresses.

No sooner do they come to terms with one stage of the loved one’s illness than the person’s behaviour changes again or their cognition declines further and the grieving starts all over again. A sense of loss is one of the most powerful feelings that people experience when someone close to them develops a dementia.

My father spoke about this with me on a number of occasions during the decade that my mother had dementia. Had SCIE been in existence at the time I know how it would have helped us.

He said that not only had he lost the person he had married in 1940, he’d also lost their future together. He missed the years of happy companionship they’d enjoyed, but equally, he was frustrated by the constraints on his freedom.

After three years at home, my 85 year-old mother was admitted to a care home. For my father, whilst relieved, this rendered the family home an empty vessel, with only the ghosts of their former lives for company. Of course my mother’s life was hardly better, coping with an utterly different and mystifying life, in the company of strangers.

My father seemed overwhelmed by sadness and anger. I noticed his underlying resentment and unhappiness that things had not turned out as he hoped. He was lonely and isolated and he worried a lot about the potential cost of ongoing care.

Unable to recognise that he was under a lot of stress and unable to to ask for the emotional support he needed, he would bottle up his feelings. He began to weep openly.

We encouraged him to spend time with friends, but he found it difficult to do things that would normally have included my mother. He tried to muster his old energy, but without his beloved partner of sixty years, he gave up.

A few years on, after a short illness and three years ahead of my mother, he died.

“Who’s in that box?” she asked at the funeral.

Sarah Reed is a dementia communication specialist and trainer; and founder of social enterprise, Many Happy Returns