Dementia is a cruel disease. The carer sees their relative “disappearing” before their eyes, but is unable to grieve their loss because they are still here and increasingly reliant on their support.
As the disease progresses, personal needs increase – as does the level of stimulation they need, to reduce anxiety caused by a world they no longer understand. Music, reminiscing, and challenging puzzles become important. The loss of more recent memories in Dementia patients, means this sort of stimulation creates topics where patients feel “safe”. However, providing this stimulation is sometimes just too much for their carers, and precious quality time together is lost for the patient and their family.
In a care home setting the hope is that stimulation forms part of the daily routine. A care home in Surrey is trialling Virtual Reality to recreate the 1950s for patients, including a “walk though” of specially recreated celebrations for the Queen’s Coronation. http://thewaybackvr.com/ . Creating such opportunities are valuable to patients.
However, for patients still in their own home – it often falls to relatives or neighbours to provide “entertainment”. Amidst the daily battle of essential care provision, carers can find providing the “luxury” of stimulating entertainments unachievable. As a consequence, they must make decisions about where their limited time goes; and the patient fades that bit more.
Experienced carers will tell you that caring for a relative in their own home is not full of endless strolls outdoors, browsing old photo albums, listening to Brahms, and doing Sudoku together. Days, and nights, are filled with emergency phone calls; changing clothing, bedding, and incontinence pads; and responding to requests from the agencies involved in the patient’s care to arrange appointments, fill in forms, and to be “there” at an appointed time. They may also have to keep their own family going, working or studying, and have their own health problems to manage.
Carers may run two households, pay two sets of bills, and shop and wash clothes for two sets of lives. Also in the back of their mind is the simmering dread that their relative’s house may be sold to move them into a care home; or that if they pick the wrong agency to provide home care their relative may suffer but not be able to tell anyone. They may have to travel long distances to deal with minor emergencies – because they are the only one who will go to the ends of the earth to try to make their loved one’s life that little bit more comfortable; more safe.
If they have any time left, the carer may also think about how all this could be easier – a more joined up approach from the agencies involved; or a manual!?
Dementia/Alzheimer’s is not the only illness to require family or friends to care for the patient; and I am not dismissing the lovely qualities of the staff in those agencies; but as a Huff Post article declared in July 2017, over one million people could have this disease by 2040; we ought to be taking it more seriously. The Government has left it to the army of unpaid carers to be responsible for co-ordinating the “survival” of vulnerable people – at the expense of quality time in the last years of their loved one’s life.
Some tasks of the carer include: sourcing and employing care companies for daily care visits; and liaising with social workers, home alarm services, memory clinics, district nurses, incontinence services, chemists, GPs, hospitals, and even the Fire Service – and that’s before you consider the services which enhance life; such as Admiral nurses, befriending groups, day care services, cognitive stimulation groups. To add to the nightmare, services and agencies differ in each area; many are provided by charities, such as Age UK, and it can be difficult to establish local availability.
Communications between the carer with these agencies is also at the mercy of the “diagnosis” being made, and agency acceptance that the carer is the one to (believe) talk to, and not the patient – who swears there is nothing wrong with them, and their son is trying to take all their money by having them committed!
Three points are particularly relevant for Jeremy Hunt, the Secretary of State for Health, in his added role covering Social Care: firstly, carers are expected to co-ordinate all these services themselves – usually feeling their way to discover what is available; secondly, the reliance upon charities to supply many of these services locally; and finally, the usual “postcode lottery” of availability.
I ask myself where the Government’s Duty of Care is; not here definitely. We desperately need a joined up and consistent approach to the care of Dementia patients at home, so that their loved ones can enjoy the last precious time with them, rather than being too drained to raise their heads.