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Beyond the family hearth, care for dementia patients is indeed clueless I’m lucky to get help in caring for my father. But many families of dementia patients can no longer cope
(34 minutes later)
My father once had a set of glistening pearly whites, which he would jokingly refer to as his “Hollywood teeth”. Similarly, in keeping with his idea of how “a gentleman should present himself”, he took pride in shaving twice a day.My father once had a set of glistening pearly whites, which he would jokingly refer to as his “Hollywood teeth”. Similarly, in keeping with his idea of how “a gentleman should present himself”, he took pride in shaving twice a day.
In many ways, hygiene and propriety were mutually inclusive for my traditionalist father. They have long since gone from his cognitive and physical grasp, robbed by dementia. I am reminded of this whenever I attempt to clean his teeth, now brown, or hold him down to clip away three-day stubble.In many ways, hygiene and propriety were mutually inclusive for my traditionalist father. They have long since gone from his cognitive and physical grasp, robbed by dementia. I am reminded of this whenever I attempt to clean his teeth, now brown, or hold him down to clip away three-day stubble.
Related: Dementia patients forced to rely on unpaid carers, poll saysRelated: Dementia patients forced to rely on unpaid carers, poll says
This sense of melancholy in looking back to life before a diagnosis is common among family members, particularly for the many who independently shoulder the burden of responsibility and care themselves, often at the expense of work (I left full-time employment in 2013, went freelance and moved back home).This sense of melancholy in looking back to life before a diagnosis is common among family members, particularly for the many who independently shoulder the burden of responsibility and care themselves, often at the expense of work (I left full-time employment in 2013, went freelance and moved back home).
As results from an Alzheimer’s Society survey revealed this week, three-quarters of GPs feel their dementia patients are being let down by health and social care services. Perhaps even more disconcerting is the revelation that a quarter of the 1,013 family doctors polled admitted reluctance in making early referrals due to insufficient support services. The latter disclosure would appear to fly in the face of the government’s claim that UK diagnosis rates – which at 59% are said to be the highest in the world – are on track to reach two-thirds. But most dementia sufferers and carers have become inured to mixed messages when it comes to the levels of support we are actually entitled to. Others – as highlighted by the tragic case of Michael Parry – simply give up hope.As results from an Alzheimer’s Society survey revealed this week, three-quarters of GPs feel their dementia patients are being let down by health and social care services. Perhaps even more disconcerting is the revelation that a quarter of the 1,013 family doctors polled admitted reluctance in making early referrals due to insufficient support services. The latter disclosure would appear to fly in the face of the government’s claim that UK diagnosis rates – which at 59% are said to be the highest in the world – are on track to reach two-thirds. But most dementia sufferers and carers have become inured to mixed messages when it comes to the levels of support we are actually entitled to. Others – as highlighted by the tragic case of Michael Parry – simply give up hope.
My family have been lucky in many ways. Since making contact with our local authority, and following a battery of assessments, carers now come on a daily basis to help my father shower and dress. This is in addition to the support we continue to receive from the local branch of the Alzheimer’s Society. While this has proven to be invaluable, it’s not enough to alleviate the stress and struggle of what one carer interviewed by the BBC described as “an all-consuming battle”.My family have been lucky in many ways. Since making contact with our local authority, and following a battery of assessments, carers now come on a daily basis to help my father shower and dress. This is in addition to the support we continue to receive from the local branch of the Alzheimer’s Society. While this has proven to be invaluable, it’s not enough to alleviate the stress and struggle of what one carer interviewed by the BBC described as “an all-consuming battle”.
A huge part of the problem we face is the conspicuous lack of training within the NHS and social services. This was recently underscored in both painful and surprising detail when one carer, upon struggling to assist my father with his ablutions, turned to my mother and said dejectedly: “I don’t think he understands what I’m saying.” She had never heard of the semantic dementia from which my father suffers.A huge part of the problem we face is the conspicuous lack of training within the NHS and social services. This was recently underscored in both painful and surprising detail when one carer, upon struggling to assist my father with his ablutions, turned to my mother and said dejectedly: “I don’t think he understands what I’m saying.” She had never heard of the semantic dementia from which my father suffers.
A huge part of the problem we face is the conspicuous lack of training within the NHS and social services.A huge part of the problem we face is the conspicuous lack of training within the NHS and social services.
We are fortunate to have a solicitous local support network at hand. But without the appropriate training, the responsibility of care-giving will undoubtedly slide back on to the family – defeating the object entirely. Hence, why I am required to still wash and dress my father. We are fortunate to have a solicitous local support network at hand. But without the appropriate training, the responsibility of caregiving will undoubtedly slide back on to the family – defeating the object entirely. Hence, why I am required to still wash and dress my father.
Is this likely to change? In February, David Cameron made a commitment that all NHS staff would be obligated to undergo dementia training. However, details over the extent of the education package remain scant, while some fear it could take years of testing before implementation. And then there’s the fact that the government’s training pledge excludes the 1.6 million social care staff on whom families such as mine depend. With local authorities having had their budgets slashed by up to 40%, it’s little wonder that the desperate dialogue which takes place in thousands of homes across the country over where our support will come from is at direct odds with the spin that emanates from the Department of Health.Is this likely to change? In February, David Cameron made a commitment that all NHS staff would be obligated to undergo dementia training. However, details over the extent of the education package remain scant, while some fear it could take years of testing before implementation. And then there’s the fact that the government’s training pledge excludes the 1.6 million social care staff on whom families such as mine depend. With local authorities having had their budgets slashed by up to 40%, it’s little wonder that the desperate dialogue which takes place in thousands of homes across the country over where our support will come from is at direct odds with the spin that emanates from the Department of Health.
There is a great irony here. Due to initiatives such as the Alzheimer’s Society’s Dementia Friends – which now exceeds 1 million members – more of us are more informed than ever over the disease. This is a significant shift that warrants praise. But, when it comes to care and support beyond the family hearth, we are as clueless as ever.There is a great irony here. Due to initiatives such as the Alzheimer’s Society’s Dementia Friends – which now exceeds 1 million members – more of us are more informed than ever over the disease. This is a significant shift that warrants praise. But, when it comes to care and support beyond the family hearth, we are as clueless as ever.