Retiring from full time NHS work has given me the opportunity to take on new challenges. At the Old Age Faculty business meeting in March 2017 someone had advocated for a charity by the name of Dementia Adventure (DA). I had never heard of them before, and subsequent discussions with many colleagues working in Hampshire confirmed I was not alone.
Dementia Adventure, as the name suggests, is a charity running holiday opportunities for people with dementia and their carers. Additionally, they are increasingly involved in a wide range of educational initiatives, to carers and a range of other organisations. In 2018 DA offered 33 holidays which supported approximately 120 people living with dementia and their carers. The holidays take place in a wide range of settings around England and in late 2018 DA ran two holidays for the first time in Portugal. Each holiday is led by an Activities Coordinator (an employee of DA) and in addition to the people living with dementia and their carers, the holiday is supported by three volunteers.
Dementia Adventure hold an excellent two-day induction course in their headquarters in Essex, mandatory for all regardless of professional background. At the induction I attended there were student nurses, a social worker specialising in Learning disabilities, an Occupational Therapist from an Old Age Psychiatry background and the former chief executive of a children’s hospice. The first day included sessions on “what is dementia”, communication, managing practical dilemmas encountered on holidays and an excellent practical session on living with perceptual impairments. The sessions were all delivered in a skilled fashion. The second day was primarily on managing first aid, CPR, choking and other issues. This was delivered by a man whose enthusiasm at 5.15 was no different from what it had been at 9.15. It was of much higher quality than the yearly mandatory training I have experienced in the NHS. It included practical sessions on safe use of wheelchairs, enlightening for someone who has limited hands on experience.
The holidays in England are five days in duration, Monday to Friday. In the last 12 months I have attended two holidays, firstly to Ireby in the Lake District and secondly to Devon. One of the couples (a man with early onset Lewy Body dementia and his partner, a nurse) by chance were attending both holidays. The other six people living with dementia encompassed a wide range of ages, diagnoses, level of dementia and physical health needs. On the second trip, one young lady was present aged in her late 20s with a progressive neurological syndrome secondary to a lipid metabolism disorder. In the Lakes two of the ladies were wheelchair dependent and needed personal care twice a day and this was arranged privately and went without hitch. Not surprisingly arranging care is not always as straight forward and DA welcome nurses and student nurses as volunteers who might be able to provide some personal care.
The activities were varied and there was always a Plan B when the weather did not behave. On the Lake District break the experiences included an ascent of Latrigg, a steamer boat trip on Derwent water, a visit to a slate mine, a visit to an alpaca farm, picnic lunches at beauty spots and a visit to the Keswick Pencil Museum (home to the Guinness records certified world’s biggest pencil!). The ascent of Latrigg to get spectacular views of the lake neatly shows the attitude of DA to inclusivity. The fact two people were in wheelchairs did not stop both making the ascent with a mixture of pushing and pulling. At the pencil museum a member of the public tried to read the motif on our Dementia Adventure tee-shirts. Her belief was that the DA stood for “Determined and active”, which whilst not being what was printed on the shirts was a rather apt way of describing the attitudes to any unexpected challenge. In Devon visits included Sidmouth Donkey Sanctuary, to local gardens and a river cruise on the Ex.
My experiences have been immensely positive. Although I had personal family experience of family members with dementia, this was so different from the normal clinical contact with patients and carers one gets in the day job. I learnt so much from immersing myself in people’s lives for a 5-day period. Obviously, your time is given for free but DA ensure that all volunteers would not be out of pocket for expenses.
We all know of patients and carers for whom regular holidays have been a pleasure in retirement and who resent the loss of opportunity that the advance of dementia entails. On my breaks there was only mild agitation, this in itself was an interesting exercise in the flexible use of distraction. But on some trips some people living with dementia present with significantly more agitation but the team have the skills to manage most situations. Only once in the previous two years was the decision made to abandon a resident’s holiday on the account of their perplexity. Contrary to the anticipation that the different environment would cause all sorts of issues, it was a real pleasure to see both the people living with dementia and their carers grow in confidence as the weeks progressed.
Any drawbacks? None really, though one lesson I had to learn is that of course I was not there to be a doctor. Inevitably carers are keen to discuss various issues. It did strike me that perhaps a couple of people were not necessarily on the best medications, but I had to be careful to talk in general terms rather than being too suggestive of future management options.
My purpose for writing the article is I suspect many colleagues will have shared my lack of knowledge of this organisation up until now. I recommend sign posting your patients and carers to their website in the hope others can benefit as much as those I met. The holidays are heavily subsidised with guests paying about one third of the cost for their first holiday in a given year. Secondly, I would commend to any colleague the opportunity to be a volunteer, it will give you skills you may never have had before and it is certainly an experience I wish I had at the beginning of my higher training rather than the end of my consultant career.
*This article was first published in The Old Age Psychiatrist 2019.
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