Talking about dementia... with your patient

Welcome to the last of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 7 - 'A good bedside manner'

Even for professionals who have (we hope) been trained in how to broach the subject of dementia, it can be a difficult step. Many doctors and nurses have told me that despite the increased awareness of dementia, raising concerns about the potential development of it to a patient isn't easy. Indeed, one of the key objections to the idea of screening people for dementia was the way in which it could potentially alter the doctor/patient dynamic, and force very uncomfortable (and in many cases inappropriate) conversations.

During the period of my father's diagnosis, the medics we met really didn't cover themselves in glory in terms of their method and manner of communication or their ability to explain, empathize, reassure, personalize or indeed work with us as a family. It was a very prescriptive experience, and we didn't appreciate the feeling that we were being processed through a system.

A doctor with a genuine concern that a patient is developing dementia should be one of the best-placed people to help that patient, but it should never be about ticking boxes. An empathetic conversation that includes signposting to support and advice is a doctor’s role, but in amongst raising those concerns it is vital to remember that for the majority of patients there will be other people in their life, as I have explored in my last six blog posts, who will also be affected by any potential diagnosis.
 
Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Talking about dementia... with your employee

Welcome to the sixth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 6 - 'The understanding employer'

I would venture to suggest that most employers - when questioned about their approach to an employee developing dementia - would say that they can’t cope with employing an individual should they have an official diagnosis.

A greater hammer-blow to a person with early-onset (young-onset) dementia, who may still be in full-time employment and relying on that income, is hard to imagine. It arguably ranks alongside losing your driving license as one of the most pivotally disempowering moments for a person who has developed dementia. Yet looking at each person’s situation individually, and trying to make reasonable modifications to their workload or environment, could enable an employee to continue to work for as long as possible if they want to.

Given the myth that still proliferates that dementia is a disease of ageing, many employers would potentially not think of dementia even if an employee of working age is exhibiting dementia-related symptoms. Yet with the drive to boost diagnosis rates, understanding what dementia is, and how your business could help an employee developing dementia (or indeed an employee who is a carer for an individual with dementia) will become increasingly important.
 
Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.

 

Next post on 24 May 2014.
Until then...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Talking about dementia... with your neighbour

Welcome to the fifth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 5 - 'Being neighbourly'

As the theme tune for a popular Australian soap told me throughout my youth, ‘Everybody needs good neighbours’. Sadly a lot of neighbourly spirit has gone out of UK society, but caring about those living near to us is a key aim in making our communities friendlier for all who live in them.

If a person is developing dementia, particularly if they live alone and have few visitors, the people best placed to help them can be their neighbours. From checking on an older person during bad weather, to helping someone living near to you who may become very needy or persistently lock themselves out, being a good neighbour can make a real difference to an individual who is developing dementia. It can also help to prevent the isolation that is so often a precursor to a diagnosis of dementia.

If a neighbour’s patterns of behaviour change dramatically, you may be the only person who notices that and is in a position to help them. Offering companionship and talking to them about your observations, rather than just ignoring them, is really at the heart of any friendly community.
 
Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.

 

Next post on 23 May 2014.
Until then...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Talking about dementia... with your friend

Welcome to the fourth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 4 - 'A friend in need'

Blood may be thicker than water, but there is also an old saying that you can choose your friends but you can’t choose your family. For some of us, our friends are our lifeline and the closest people to us.

Seeing changes in a good friend that makes you suspect that they are developing dementia poses a huge dilemma for many people, who may feel that they risk their treasured friendship if they mention their concerns to the person they are worried about. Even the most steadfast friendships can go through rocky stages, and for some people with dementia, fierce denial of the problems they are having can lead to them cutting off those who care about them.

Good friends are well versed in the challenges of this unique relationship, but whilst family members are routinely recognized as reliable advocates for a relative who has dementia, a friend’s status is often much more blurred, and can lead them into conflict with a family or professionals. If, however, there is one time when a person needs a little help from their friends (close friends more than just ‘Dementia Friends’) it would be when they are living with dementia. Many people with dementia report losing 'friends' as one of the most distressing aspects of a diagnosis of dementia – a good friend can literally make the difference between whether an individual lives well with dementia or not.
 
Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.

 

Next post on 22 May 2014.
Until then...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Talking about dementia... with your sibling

Welcome to the third of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 3 - 'Bonded by blood'

In the concentration of written material about a partner or parent developing dementia, little notice is often paid to the siblings of those people. Even less thought is given to what it must be like to see your twin developing dementia.

For siblings with close bonds and in similar age brackets, this is perhaps the one relationship that offers the most stark insight and poses the question – why did my brother/sister develop dementia and I haven’t? Moreover, am I more likely to in the future?

Those concerns over genetics add to the emotional and practical effects of a brother or sister developing dementia, yet in the midst of that turmoil a sibling is potentially the one person who could help their brother or sister the most. A close sibling that a person with dementia has grown up with, and known all of their life, is often the best-placed individual to enable that person to live well with dementia through utilizing a whole host of therapies, including reminiscence.
 
Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.

 

Next post on 21 May 2014.
Until then...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Talking about dementia... with your parent or grandparent

Welcome to the second of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 2 - 'Role reversal'

As regular readers of this blog will know, it is the relationship between parent and child that underpinned my personal experiences of dementia. As my father's vascular dementia gradually advanced, I lost crucial parental stability in some of the most important years of my life – my teens and twenties. Equally, my father also lost out though being unable to enjoy those years with me in full cognitive health.

The roles of parents and grandparents, children and grandchildren are very clearly defined in most people's understanding of family makeup. Yet dementia has the ability to turn those relationships on their head. It rarely happens overnight, giving you time to adjust in some respects, but I don't think anything can really prepare a child for having to take on a role that is likened by many to becoming a parent to their parent.

Concerns that your parent or grandparent are developing dementia can be devastating both emotionally and practically. Equally, from the point of view of your parent or grandparent they may be feeling very fearful, worried that they are letting you down, or concerned by a perception they have of becoming a burden to you.

Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.

 

Next post on 20 May 2014.
Until then...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Talking about dementia... with your partner

Welcome to the first of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 1 - 'From lover to carer'

Whatever your age, and regardless of whether you are heterosexual or a member of the LGBT (Lesbian, Gay, Bisexual or Transgender) community, married, living together or in any other partnership relationship, seeing changes in your soul mate that indicate that they are developing dementia can produce some very stark emotions.

Most partners are together believing that they will grow old as a couple and dream of spending their lives sharing in the things they enjoy most. It is natural to look at the more confronting aspects of your partner's long-term prognosis with dementia and imagine your life changing from being a lover to a carer.

Dementia is perceived to be a hammer blow to a relationship, but I've known many couples who have adjusted well and remain loving and devoted to each other throughout one or both partner's dementia. Likewise a diagnosis, for some, can enable them to understand changes in their partner that without a medical cause could become grounds for divorce.
 
Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.

 

Next post on 19 May 2014.
Until then...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook