Dementia Awareness Week: a family carer's message to professionals

Carers should be recognised as advocates and their views integrated into assessments and care packages

 

Relationships are based on memory, says Ming Ho, but people with dementia may come to view loved ones as strangers.

Every week or day of the year, it seems, is designated to remind us of some issue or medical condition. The public, and indeed care professionals, could be forgiven for awareness fatigue. So what is particular to dementia that sets it apart from all these other claims on our attention?

Well, firstly the stats. According to the UK Alzheimer’s Society 2013 data, there are now more than 800,000 people in this country with some form of dementia; one in three over 65 will develop it, the incidence increasing with age. There are already 10 million people over 65 in the UK and 3 million over 80. This latter figure is projected to almost double by 2030. Thus everyone is likely to know someone affected, directly or indirectly. As a care professional, even if you are not a specialist, you will probably come into daily contact with at least one person with dementia.

Unlike those who live with other diseases, people who experience this syndrome are often unable to recognise their own symptoms. There is some controversy in healthcare circles over recent government initiatives to increase diagnosis rates, with debate over the ethics of “screening” and possible misdirection of resources. These are valid points. But a person with dementia, even at quite an advanced stage, may be unwilling or unable to self-present.

For this reason, carers need to be recognised as essential advocates, both pre- and post-diagnosis, with their views fully integrated into assessments and care packages. While it’s important for the autonomy of the person with dementia to be respected, the lack of insight which is so often a symptom means their needs may not be met, if only their own views are recorded and taken at face value. Many people with dementia can present well during brief interviews and believe they are 100% independent, while actually having very compromised ability to take care of themselves.

If a family carer is the principal (or only) witness to symptoms, they may feel huge conflict at flagging up concerns or asking for outside help, in fear of betraying their loved one. They may need “permission” from a third party. Ideally, there would be time for both the person with dementia and their carer to each have private conference with case workers, to build the whole picture.

And for those without family around, it is even more crucial that professionals read between the lines and act as facilitators to access support.

Systems need to address the difficulties faced by distance carers, who may not live in the same borough, region, or even country as the person needing care. This is an increasingly common scenario: don’t assume that just because a person isn’t physically there 24/7, they are not a full-time carer. As my mum’s condition progressed, I came to run every aspect of her daily life, whether in person, or by round-the-clock phone and email. (She was largely oblivious to this.)

The latest government directive to recognise carers’ rights is positive, but should acknowledge that services may need to be co-ordinated beyond one local authority. Professionals should be flexible and employ all possible means to enable communication with carers who cannot be present for appointments during office hours. We need more investment in out-of-hours cover for emergencies – which tend not to occur only Monday to Friday, 9am to 5pm.

Perhaps the hardest thing particular to dementia care is the state of denial by the person with needs, which means they may not co-operate with or welcome help of any kind – and may indeed be antagonistic. This requires special patience, understanding and often a good degree of subterfuge and lateral thinking.

As a professional you may be aware of the challenges posed to you by non-co-operation of your client; but consider the effect this can have on family. The stress placed on the family carer by having to work under the radar to ensure their loved one’s safety cannot be underestimated; your support can make the difference.

Finally, remember emotional context. Amid the pressure of task-based care, it’s vital to appreciate what it feels like to live with dementia: lonely.

Relationships are based on memory. Imagine the isolation of not being able to share that with your nearest and dearest, let alone the many friends and casual acquaintances who form the tapestry of your life. A person with dementia feels constantly abandoned and may come to view their loved one as a stranger, whom they cannot trust; the carer feels alone with his or her own thoughts, memories and wider life beyond that moment. Both may have struggled with this situation for many years before it’s revealed to anyone, often through some crisis.

Dementia is a long and solitary journey. You are the hand that reaches out in the darkness.

Ming Ho is a writer and long-term carer of her mother, who has lived with dementia for more than a decade. She blogs at (Dementia Just Ain’t) Sexy

http://www.guardian.co.uk/social-care-network